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How an Athlete’s Mindset Guided Marina’s Triple-Negative Breast Cancer Experience – Twice

How an Athlete’s Mindset Guided Marina’s Triple-Negative Breast Cancer Experience – Twice

Marina had just qualified for the 2016 Boston Marathon when she received a life-altering diagnosis: stage 2 triple-negative breast cancer. As a 31-year-old with a family history and the BRCA1 mutation, Marina had to pivot from marathon training to an aggressive treatment plan. Throughout her first experience with the disease, she leaned into her identity as a runner, treating chemotherapy as a physical and mental endurance test. She was motivated by the same goal she had before cancer: to reach the ultimate finish line of the Boston Marathon, which she completed just one year after starting treatment.

Interviewed by: Ali Wolf
Edited by: Chris Sanchez

After cancer, Marina’s life continued with beautiful milestones, including marriage and the birth of two children. But after five years of being cancer-free, a new lump led to a second diagnosis of stage 2 triple-negative breast cancer. This second diagnosis was a different experience because it happened during the 2020 pandemic, and while Marina was nursing her two-month-old daughter.

Marina B. triple-negative breast cancer

Facing the challenge of parenting while undergoing chemotherapy and radiation, Marina once again leaned on her “Impossible to Possible” mindset to navigate the physical and emotional hurdles.

Today, Marina uses her experience to empower others through public speaking and her YouTube channel. By sharing and documenting the raw truth of breast cancer, Marina provides a roadmap of hope for those navigating their own cancer journey. Her story is a testament to the power of taking the next step, no matter how daunting the path may seem.

Watch Marina’s videos or read the interview transcript below to know more about her story.

  • Reframing the treatment mindset: Treating chemotherapy as “self-care” or “marathon training” can help alleviate the psychological burden of aggressive medical regimens.
  • Proactive fertility protection: For young patients, discussing options like goserelin injections early can help protect ovarian function during chemotherapy.
  • The importance of body literacy: Marina’s self-checks were vital in identifying her second diagnosis at the five-year remission mark.
  • Accepting help is a skill: Learning to lean on “meal trains” and appointment rotations is essential for maintaining energy, especially for those used to being independent.
  • A universal truth: We cannot always control the diagnosis, but we can control our perspective and the way we choose to show up for the next step.

  • Name: Marina B.
  • Age at Diagnosis:
    • First diagnosis: 31
    • Second diagnosis: 36
  • Diagnosis:
    • Triple-Negative Breast Cancer
  • Staging
    • First diagnosis: stage 2
    • Second diagnosis: stage 2
  • Biomarker:
  • Symptoms:
    • First diagnosis: month-long twinge of pain in breast
    • Second diagnosis: appearance of lump in armpit
  • Treatments:
    • Chemotherapy: AC and paclitaxel
    • Surgery: mastectomy and reconstruction
    • Radiation therapy
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer
Marina B. triple-negative breast cancer

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

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


Transcript of Marina’s Interview
  1. Cancer diagnosis and type
  2. Life before cancer: Career, running, and travel
  3. Family history, BRCA1 mutation, and first mammogram at 31
  4. From Boston qualification high to triple-negative breast cancer diagnosis
  5. Surgery, reconstruction, and running Boston as a survivor
  6. Using a “light at the end of the tunnel” to get through treatment
  7. Inspiration from my mom and supporting others on YouTube
  8. Dating, fear, and my partner’s support during treatment
  9. Being asked about future children and choosing goserelin
  10. Learning to accept help and the value of community
  11. Monitoring after the first treatment, and a new lump at year five
  12. Running the 2016 Boston Marathon as a breast cancer survivor
  13. Motherhood, complications, staph infection, and working through things
  14. Second cancer diagnosis during the pandemic, and with a newborn
  15. I started a YouTube channel to share chemo tips
  16. Chemo while parenting newborns, and reframing infusion as self-care
  17. Using an athlete’s mindset and gratitude to get through chemo
  18. Unexpected blood transfusion and learning to let go of control
  19. Resources, chemo checklist, and paying it forward
  20. Cancer stage details for both diagnoses
  21. Chemo hair loss expectations and first tips
  22. Cutting my hair short before chemo hair loss
  23. Using cold caps and hair-preserving devices
  24. Losing my eyebrows, eyelashes, and nose hair
  25. Redefining “survivor” and finding power during treatment
  26. Preventing neuropathy with acupuncture and icing
  27. Dental and mouth care during chemo
  28. Fertility, goserelin injections, and having kids after chemo
  29. Managing nausea with medications and natural aids
  30. Understanding the “wave” of fatigue and chemo brain
  31. My chemo infusion essentials: Ice gloves, eye mask, and headphones
  32. Leaning on support and not feeling alone

Cancer diagnosis and type

I am Marina, and my cancer type was stage 2 triple-negative breast cancer.

Life before cancer: Career, running, and travel

I was a dental hygienist, and I loved my career. I loved to travel and was doing a lot of running. At that time, I was growing more in my running races. I had just run a full marathon. It was my third full marathon here in Arizona, where I am from. I had said I would never run a marathon, by the way. I was one of those people. 

I was dating my husband, and running this third marathon is significant because when I ran my first marathon three years before being diagnosed, I had a really decent time — under four hours — and I thought maybe I could qualify for the Boston Marathon. Then I ran it the next year, and I was five minutes from qualifying, and then in my third marathon, I qualified with just under two minutes to spare. It was within that time frame that I had just had my mammogram the week before, and I was having a biopsy done the week after qualifying for the Boston Marathon.

Family history, BRCA1 mutation, and first mammogram at 31

I was 31, and that is significant. I tell everybody this: really pay attention to their body. I had gone for my first mammogram because I was the age when I was due to go. My mom at that time was a two-time breast cancer survivor, and her first diagnosis came at the age of 41. After her second diagnosis in her 50s, she found out she was BRCA1-positive, so she had the genetic mutation on the breast cancer gene. She was told to tell her family, including her daughters. They basically told me to go at 31, ten years before the age that she had her first diagnosis, and start this whole process — get your first mammogram done, your genetic testing. Could I have done it sooner than 31? I could have. I had the knowledge for maybe a couple of years, but it was just the timeline I was on, and I was on this timeline of running and traveling.

As I was running and training for that marathon, I noticed an ache in my breast. It felt like a little twinge of pain every day that I was noticing, and it was there every day, and it was not going away. In my mind, it reminded me, oh, I am about that age; I need to start this process. So yes, I had some pain, and yes, I had a family history, and I had a timeline given to me of when I should start my screening.

From Boston qualification high to triple-negative breast cancer diagnosis

What happened next was a whirlwind. I was dating my now husband, and he was at the finish of this marathon where I had just run this really fast time to qualify for one of the most popular marathons in the world, Boston. The next week, I had the biopsy and was told I had an aggressive breast cancer, which is triple-negative. It is negative for hormones feeding it, so it typically grows faster. That is the bad news, but the good news is that it responds to chemo well. I went from what I call the top of the mountain — the highest point in my life of achievement as an athlete — to being knocked down, being told I needed to start chemo immediately. I was going to lose my hair. I would be losing my breasts, since it turned out I had the genetic mutation that my mom had, which did not surprise me as much. As soon as I knew I had cancer and the genetic tests were not quite back, I thought, “It’s going to be positive; my mom has had it twice.”

What that prepared me for was knowing I would remove my breasts. I could actually accept that better because I saw my mom go through chemo twice, and I thought, I do not want to do that. So I will remove everything. The hair was really devastating for me. That was something that caused me to process and release. The beautiful thing, though, of going through treatment for six months of chemo was that my husband and I grew closer together, and it brought us closer together. We knew we were meant to be.

Surgery, reconstruction, and running Boston as a survivor

With the determination of getting to Boston, I finished chemo, did surgery to remove my breasts, and did reconstruction. Then I was cleared with four months to start training and ultimately run the Boston Marathon as a survivor one year later. I could not delay. The rules with Boston are that when you qualify, you have to register to run it the next year, or you have to qualify again. In my mind, it took me three years to qualify; there was no way I was going to qualify after treatment. I gained a pound every week during treatment because of steroids. For women with breast cancer, typically, you gain weight because of the medication they give you, versus other cancers, where you might lose weight. I was gaining weight; I was fatigued. There was just no way I was going to qualify again. So, in my mind, I had this timeline of, “I must get through this treatment because I am going to Boston.”

My surgeon and my oncology team honestly never promised me anything. They said, “We just want to keep you alive; that is our goal.” But I had a personal goal, and I had to do things my way, too, and I did.

Using a “light at the end of the tunnel” to get through treatment

It is incredible to have a physical finish line like a race. I call it the light at the end of the tunnel for a lot of people with their treatment. It is really a reminder of why you are going through it. For most people, it will not be because they are going to Boston. For most people, it will be because they want to travel again, they want to play with their kids, they want to find a new sense of normal — just living their life. I remind people of that light at the end of the tunnel: this is why you are going through treatment.

When I lost my hair, I was mad and sad, but then I immediately thought that the chemo was working. When I constantly put things that way, it made going through the process so much easier. I felt like I was fighting, like mad at this medicine, and then I thought, “I am just going to say it is working.”

Inspiration from my mom and supporting others on YouTube

Having someone who had been through the process and someone as close to me as my mom — seeing that she had lost her hair, that she had gone through these surgeries, and that each time she was told she did not have any evidence of disease — showed me that I could get through this. Having that example was so valuable.

It is pretty much what I do on YouTube and what I have done: remind people that I have been through this; others have been through this; you can do this. I will say, though, being told you have cancer will always be shocking and will always be something to process. But when you look to others who have done it, it is really helpful.

Dating, fear, and my partner’s support during treatment

It was everything. I tell people this: I tried to break up with him after I was diagnosed. We had been dating for three months. They had experienced loss in their family. They lost a brother-in-law to colon cancer in his 30s. I almost felt like I was protecting him, too. I wanted to protect him, and I thought, “I cannot get through chemo and lose my hair and go through all this and also have the energy to date somebody.”

When I approached him with that, he said, “Well, no, we are not. That is not why you break up with somebody. You break up because you are not compatible.” He really pushed my fears aside. He literally told me, “If you are afraid of losing your hair and you are afraid of losing your breasts, that is on you, because I do not care about those things.” Having someone alleviate your fears allowed us to move forward with a clean slate and just date as people would. We went to dinner, and we went dancing a lot. We met country dancing, so we continued to date, and it was something that was really beautiful during what would be considered a dark time.

Being asked about future children and choosing goserelin

I think it was so important that it was my oncologist, but also her nurse navigator who asked me about this. Typically, you have a medical team in treatment, but they asked me that question before we started chemo: “You are going to start chemo; you will lose your hair. Do you think you want kids?” To be honest, my answer was, “I think so.” 

It was not 100% yes. A lot was going on. But to even know that you might want that, you need to communicate it, because then they can communicate their options to you. I chose the option of goserelin — doing injections every four weeks to put me into menopause and protect my ovaries. 

It was just so important that I was asked that question. You do not have to 100% know your answer, but to get your options, have the conversation.

Learning to accept help and the value of community

The first time I went through chemo, it was so important to accept help. It is something I learned how to do because I would say I was not good at doing it before. I was 31 when I was diagnosed. I was head of household. I was taking care of my own bills and working, so accepting help was something I had to learn how to do, but it was so valuable.

Since I was a runner, I was going to a running group, and that group of people was so helpful. They set up a meal train. Something I did not realize I needed at the time, but was very helpful, was having somebody go to my appointments with me if I wanted that. At that early age of being diagnosed, my parents were working, my sister was working, my boyfriend was working, so a lot of them could not go to my appointments. Having a rotation of people who offered to take me or pick me up and bring meals was so valuable.

Monitoring after the first treatment, and a new lump at year five

I was just in the queue of what oncology patients might do, which is you return every three or six months. You talk to your oncologist; maybe there is a scan done every six months or year. I was just in this regimen. Being triple-negative, there was no medication to continue at the time. There is something they would use now if I were diagnosed now, but I was just being monitored. My husband and I got married, and we had our two kids, and I was now in year five.

Five is a very important timeline, usually in the cancer world. When you reach remission for five years, your odds of cancer returning drop, so you want to get to five years. It was during that year that I was taking a shower and doing a self-check. I was washing with soap, and I felt a new lump near my ribs, which would be near the breast area. I knew it felt like a lump, and had not been there before, and I knew in my heart and in my body that I had to call my oncology team the next day and get in for an ultrasound. 

Listening to my body and doing that led to a new diagnosis at year five.

Running the 2016 Boston Marathon as a breast cancer survivor

After being diagnosed the first time and going through six months of chemo and surgery, I was cleared in December 2015 to start running, and Boston is in April. I started treatment in April 2015, and I ran Boston in April 2016 as a breast cancer survivor. It was the best feeling in the world. It was incredible. I made a shirt that said “Survivor.” On the back, it said something like, “I just beat cancer,” basically something that made people give me high-fives during the race. Runners running the race with me were patting me on the back, and I was able to chat with some people during the race.

Your whole life changes when you are diagnosed with cancer. You really see the world through a different lens. For me, it is gratitude. It was the best feeling.

Motherhood, complications, staph infection, and working through things

There is a big part between having the two cancers that occurred for me. Getting married — the beautiful, best wedding, people crying, everything, dancing on the dance floor where we actually met at the country bar that my husband and I met at after our wedding.

Having our son — he was a baby when I had a small lump on my breast reconstruction that my surgeon wanted to monitor. We chose the best way to monitor that. We did an ultrasound. You just cannot ever guarantee anything. We removed some of that tissue, and for two weeks, everything seemed fine. At four weeks, I had a staph infection. When my son was a newborn baby, I had to go through staph infection treatment for a lump that was removed.

By the time my son was 14 months, I had had six breast surgeries. I had IV antibiotics for eight weeks. I had been wearing a fanny pack with antibiotics running 24/7. I did not have a port at that time, so now I had a port, like a catheter, and I still worked as a dental hygienist, so it was a tough time.

Motherhood is hard by itself because you have to learn how to be a mom. You have never done it before, and it is changing every day, especially with a baby and their sleep schedule and all the things you worry about. That itself was amazing to me. I think my children have been such a blessing because they are my reason for learning how to get through it, and I just did. My coworker would see me in the break room cleaning my port line from a staph infection that I had to take care of daily, and I would go back and see patients. The medicine was in a black fanny pack under my scrubs and lab coat, and no one could really tell. She said, “I cannot believe you are going through this, and people are out there complaining about traffic.” We all have the right to go through what we go through, but I just did what I had to do. I really did.

Second cancer diagnosis during the pandemic, and with a newborn

I definitely thought I was past it. I was not one of those people who lived with fear every day, which is common for survivors. I was, like I said, just in the queue — I’d go to my appointments and do what they tell me. People around me know I try really hard to shop organic, have a variety of food, and exercise — clearly I am a runner. So it was surprising.

I will paint the picture: it was the end of 2020, the year of the pandemic. I had been home most of that year, pregnant with my toddler son, and then I had just had my daughter. She was two months old. Finding that lump was really surprising, and for a month, it was pretty scary. You can go to my YouTube channel; I have a video where I share part of that diagnosis. I am sitting in the car recording for YouTube, saying, “I am pretty sure I have cancer again,” and then I get the phone call from the cancer center while I am in the car, saying, “We need you to come back tomorrow.” The ultrasound did not look good. They said I needed to be biopsied the next day.

It was a tough time, but going through it the first time still prepared me so much for the hair loss and for the chemo. Everything I learned, I vlogged, and I am so thankful because now it can help so many people with those videos.

I started a YouTube channel to share chemo tips

It is crazy. I started the YouTube channel in March 2020. I had so many people reaching out to me after my first diagnosis through social media — friends saying, “Hey, my mom has been diagnosed,” “My coworker’s friend has been diagnosed,” and they would ask me for tips. I was getting enough of those, and I even offered my phone number if they wanted to call me, but it is weird to call somebody you do not know and ask questions about what to expect.

So I thought, “Why don’t I just record some videos, and then they can send this to their loved one if they need it?” It was just an idea I had. I started watching YouTube videos on my lunch break on how to make YouTube videos. I shot my first two videos on my iPhone in my kitchen with an inexpensive microphone. My husband gifted me a nicer vlogging camera right before I was diagnosed again, a couple of months before. So now I had this nice camera; I had the experience of filming and editing, and it became this natural progression. I started the YouTube channel to help people with chemo tips; here was my chance to really help them because I had been diagnosed again, and the rest is what it was.

Chemo while parenting newborns, and reframing infusion as self-care

It was exhausting. It was tiring. For me, as a breast cancer survivor, I was never able to breastfeed my children. That was just something I knew I was not going to be able to do. Both of my babies were formula-fed. I say, in a small way, since I had accepted that, it was actually easier for me when they were newborns. I just got to enjoy cute babies for the first year, and anybody could feed them a bottle, so that was helpful.

I enjoyed going to chemo. I would say, “Let me go to chemo.” I actually learned this during my first journey. I told a friend, “I have never flown first class, but I like to imagine that going to chemo is like flying first class.” They offer you a warm blanket, and I would say, “Can I have two?” Then I would pull out my headphones, pull out my book, and turn on my Netflix show. The second time, since I was so tired and busy at home, I treated chemo as my self-care time, which is crazy to think. When else can you sit when you are a mom and have little ones? I treated it as self-care time, even though the effects were not good. I did a lot of my video editing at chemo as well.

Using an athlete’s mindset and gratitude to get through chemo

It is really a state of practicing gratitude when you think about it. When I went into chemo the first time, I was a marathon runner. How many people say, “I am going to run 26.2 miles for fun, and I am going to pay to do it, and I am going to train to do it, and I am going to take a lot of time to do it”? Not many people do that. So when I went into chemo with that mindset, I treated it as another marathon. I have to train for this. I have to eat well, sleep well, and keep my mind right. Being an athlete helped me immensely with the chemo process.

It was, “Why am I doing this again? The chemo is working. My hair is falling out — okay, that sucks, but the chemo is working because I am getting to that finish line.” Imagine this, too: I just ran a marathon recently and raised more money for cancer research with that one. It was great. But imagine what it is like to wake up on a Saturday morning and decide that you have to go run 12 miles. It is so easy to say, I do not feel like it today. When you have that mentality going through treatment, you can get through anything. I call it questioning. As an athlete or as a coach — whether it is runners or people going through cancer — it is like, “What can we question today that will help us get to where we need to be?”

Unexpected blood transfusion and learning to let go of control

It was just so great to be done. I would say I have had hiccups through the process. I mentioned having the staph infection at one point, but during the second journey, when I went to have chemo — what I thought would be another chemo, not knowing it would be my last — they did my labs, as they always do before chemo. They check your blood work. They said, “Your hemoglobin is really low. Your iron is incredibly low. We cannot do chemo today.”

I had had that happen before during chemo, where you typically have to pause and might get a shot like pegfilgrastim to boost your white blood cells or your immune system. This time they said, “You need a blood transfusion.” I was not ready to hear that. I thought I was there to get chemo. I was always trying to check them off, like let us get through this as fast as possible. Being told I could not do chemo that day was really upsetting. I sat with that for a minute, and I had a friend call me at that exact moment and say, “What if this blood transfusion makes you feel better because your iron is so low?” I was not even thinking of that, and it was true.

I had a blood transfusion on the 15th chemo of my last journey, and my oncologist said, “You are done. You have done enough. We are going to do this transfusion; you are done.” Unexpectedly, it was my last chemo. I thought it would be after 16. It was another example of trusting the process, trusting your doctors, and trusting where you are. Sometimes we want to control so much, but I think the biggest lesson of cancer is that we actually have to let go of a lot of control. We have to let things happen as they are happening and be able to pivot and go with it. It is going to be okay. It will all go as it should.

Finishing my second treatment, radiation, and speaking about my story
I finished treatment in the summer of 2021. The second journey, I had to do radiation after chemo, so that was new. I went through radiation. I share those tips on my channel. Since then, I continued using YouTube for quite a while. I did one video a week, whether it was a long-form tip video or what, I started doing lives, and I loved that. I love interacting with people, so I committed to two lives a month for quite a while. I got to interact with my YouTube audience and help them feel not alone on the journey, and let them ask their questions.

With my background in healthcare and dental hygiene, I typically answer questions from the perspective of a survivor. I am not going to tell you what medication to take, but I will guide you from that perspective. I really enjoyed that. I continue with at least one live a month now. Life gets busy. As a mom, I have chosen to stay home for the last year and a half with my kids and gain experience raising them. The newest thing I have been doing that is really amazing is getting the opportunity to speak and tell my story. I have made this talk, which I call “Impossible to Possible.” It shares the story about getting to Boston, beating cancer twice, and starting a YouTube channel — all things I would have never, in a million years, at the age of 29, told you I would do at the age of 30. I would not have been able to tell you I would have 31 chemo treatments, 30 radiation treatments, nine surgeries, an infection, and that I would get to Boston and start a monetized YouTube channel. In that 20-minute talk, I get to share with people that we get there by taking the next step. That is my new passion: sharing that story.

Resources, chemo checklist, and paying it forward

If anybody knows somebody who needs the videos, I want them to go to my channel. I have resources there. I do have a free chemo checklist. I think that is really valuable for people because chemo is overwhelming. What do I take? What are the questions I ask? I provide that so they can find it on my channel and feel confident and not have to think about all of that. That is what I do, and I am really happy I can pay it forward.

Cancer stage details for both diagnoses

Both were stage 2. The first diagnosis was stage 2 because of the size of the tumor, but it had not progressed into lymph nodes or other areas, thankfully, and that is something they check after chemo and during surgery.

Chemo hair loss expectations and first tips

The first tip I would offer is to communicate with your medical team. They are going to talk to you about your treatment, and you want to be clear: Is this chemo expected to result in hair loss? Some might just cause thinning of the hair, so it is about setting expectations from the beginning. Then ask about the timeline of when you should expect hair to start falling out. I had aggressive breast cancer. Traditional chemo was used, like AC and then paclitaxel, but for me, it was between 14 and 20 days on each journey, and knowing that timeline was really helpful. So again, it was about managing my expectations, so I knew what it would feel like when I showered and when I put my head on my pillow to go to bed. Those were really important.

Cutting my hair short before chemo hair loss

One tip that helped me with the process was that I had long hair the first time I was diagnosed with breast cancer. I do not remember where I heard it, but it was helpful to cut my hair short before the hair loss, and it helped me process what was coming. I think mainly for after, when the hair started to grow back, I had a new goal. My mind was not like, “Oh, I have to get back to long hair right away.” It was like, “Oh, I can get back to that short bob that I cut before losing it.” That was something that was really helpful.

Using cold caps and hair-preserving devices

This was something I was not aware of the first time I was diagnosed, so I did not even consider it. But the second time I was diagnosed, my cancer center had brought in that service. So if you have a cancer center, again, ask those questions to your medical team or a nurse navigator. It is ideal if they have a device there that you can rent and use. It is typically a higher-end device that will cold cap for you, and you will have better success with results. The other thing to know with that option is that a lot of times, they let you start the process, and it is kind of a pay-per-session model. So if hair loss does start to occur, you are not locked into committing to all of it. For a lot of people who want to consider it, they make it easy to start and try it.

Losing my eyebrows, eyelashes, and nose hair

That was unexpected. I did not think about it. We are just thinking of the hair on our head, which is very important for a lot of us, and that is why it is such a part of the grieving process with treatment. But losing eyebrows and how defining they are to our face is something, and losing eyelashes, and actually something as little as nose hair too. Chemo itself is drying, plus with no nose hair, you can expect nosebleeds and things like that. So again, knowing that beforehand that you can expect that, you can use an ointment in your nose to help. You can learn to draw on eyebrows, which I became really good at because it made me feel more normal going out with eyebrows. I found that I could actually manage the hair loss pretty well. I felt comfortable with that, but I wanted eyebrows when I went out. So I had a friend who was a makeup artist who taught me how to do my eyebrow makeup because I had no idea. Being prepared for that is helpful.

Redefining “survivor” and finding power during treatment

Oh my gosh, there are so many waves that go through being a survivor. To me, a survivor starts, by definition, when you are diagnosed. You do not have to wait to claim being a survivor. So being a survivor is processing. It is knowing that you can be emotional about losing your hair and then having a plan that works for you, like a wig or chemo caps. 

Once you are comfortable with that plan — I would say comfort is different for everybody — but for me, again, knowing how to do my eyebrows, for example, and feeling more comfortable in my skin during treatment, I actually viewed it as a way not that I was trying to make other people feel comfortable, but as a way of giving people some hope. They could probably tell I was a cancer patient if I went out bald, but I still chose to do that, and I still chose to show up to a friend’s birthday or to go to dinner with my husband that I was dating at the time. I chose it as a way of taking some of the power back that we feel like cancer takes from us.

Preventing neuropathy with acupuncture and icing

This is a big one that I learned a lot about. The first time, I addressed neuropathy by having acupuncture done during chemo. It was an option at my cancer center, which was pre-pandemic, and I found it to be very helpful. I had not done acupuncture before treatment; this was not something I was experienced with, but I found that it really helped prevent neuropathy. Neuropathy is experienced as pain, more like tingling — little needlepoint tingling in your hands and feet — from the effects of chemo affecting the nerves. So acupuncture was helpful.

The second time I was diagnosed, I was told by my oncologist to try icing my hands and feet to help prevent the effects of that, and I did that. I would bring a cooler with ice, gloves, and socks with ice packs, and I would put those on during active infusion, and I feel like it helped prevent neuropathy from getting worse. I have still experienced it in some regard, but it helped me.

Dental and mouth care during chemo

This is something I tell people about because I do not think it is at the forefront of our minds, but have a dental check if you can before starting treatment, just to give you a baseline with a dentist that is monitoring your gums. You can expect possible mouth sores because the tissue of the mouth is so sensitive.

It is good to have a dry mouth rinse. That can be very soothing, and those are going to be alcohol-free when you get a gentle one. Also, just keep up with your regular brushing and gentle flossing. It is all related to our immune system, so it really helps to keep up with that. As far as teeth sensitivity, I mentioned that in what I consider my viral video on my YouTube channel. It was unexpected that my teeth would be sensitive, and I cannot even explain to you exactly why, but I did experience that. So pay attention to that, and if you need to, use a sensitivity toothpaste and continue with your oral care just to stay on top of that.

Fertility, goserelin injections, and having kids after chemo

More and more women, unfortunately, are being diagnosed earlier with breast cancer. So women need to talk with their team about whether chemo can cause infertility and, if there is a possibility it can, what they can do to protect their ovaries to have kids after. I was given two options: one, doing fertility treatment — basically collecting eggs before treatment; or two, having injections of goserelin, which would put you into forced menopause and potentially protect your ovaries from chemo, and then allow you to have kids after. Doing the eggs is a timely thing, and typically, if they are trying to get rid of cancer cells, they are going to want you to start treatment.

So doing goserelin was the best option. Every four weeks, I would get it by injection, and I did that every four weeks for six months during chemo. For me, I can say that it worked. Although the idea of getting another injection was not pleasant, it did work, and I was able to have two kids after chemo. 

Managing nausea with medications and natural aids

Probably one of the most common side effects is nausea. Typically, they will prepare you by prescribing medications that you get filled before so you have those on hand that you either take before your appointment or after. At infusion, they will give you a pre-med of anti-nausea in your infusion. Knowing that and asking about it is good. You want to stay ahead of nausea because once it sets in, it is hard to get rid of.

So, being informed — am I taking this at home ahead of time, or is it being infused? — is helpful. They typically give you what to do. Then I used other natural aids to help. I chose to take some ginger chews with me, since ginger is a natural anti-nausea product. I literally took dried ginger that you can get in bulk at your local farmers’ market or grocery store. I also wore those wristbands that you might wear on a cruise ship if you are prone to seasickness. I figured anything additional I could do to prevent it that was not another medication would be helpful. So I wore those wristbands and would wear them the day of infusion all the way until the next day. I do think they might be a mental thing, a placebo, but I believe it did help me.

Understanding the “wave” of fatigue and chemo brain

I will start with fatigue. I think fatigue is one effect of infusion that you will notice the most, and it is very interesting the way it comes on. It can really hit you the day of infusion. I think it is even just from the stress of being at a cancer center and all the things you have been given that day. Then you might start to feel better because of the steroids they give you, and once that regimen is done — midweek — you feel this lull again before you feel better and go back. So learning what I call the wave of fatigue is good because then you can plan around that. You can plan which days you want to run errands and which day you want to schedule the most work if you are still working. So learning that wave of fatigue was important.

Chemo brain is real. It can take a couple of weeks, and you just start to notice this fog. I felt like it got worse when my metabolism was working, so after lunch, I felt fatigued. If you normally feel a little sleepy after lunch, think of chemo brain after lunch. Again, that would not be an ideal time to be making decisions, or if you have children, you would want a grandparent, a friend, or somebody helping you during that time of fatigue and chemo brain.

You will not feel like that all day, every day, and it is the most intense during treatment. It will improve when treatment is done, and it can take up to a solid year of understanding what your new baseline is. I do not really like to say “normal” because nothing is really normal again, but set it as your new baseline, and then go from there. Things that help all of this are movement and staying hydrated. We probably hear it a lot, as people and as patients, but staying hydrated and movement tend to help. If I could get up and do a morning walk or an afternoon walk, that movement helped a lot.

My chemo infusion essentials: Ice gloves, eye mask, and headphones

My essentials were definitely the ice gloves and the ice socks to cool my hands and feet because the effects of neuropathy are real. They can be very unpleasant, and if you can prevent that, it is great. I would just take a lunchbox cooler; nothing big, but enough for those and one refill pack, since I was receiving two hours of infusion.

Those, and an eye mask. Typically, in a cancer center, it might just be one big room; you might have little dividers. It is not common that you will get your own private room. So having an eye mask was so nice to put on and relax, and dim the lights. That leads into my next one, which would definitely be some kind of headphones, whether it is your AirPods or over-the-ear. I think it is great for music, meditation, or watching your favorite show — whatever it is. Having that was definitely essential.

Leaning on support and not feeling alone

It is so important to remember in this process that you are not alone. You might feel alone in your journey, but I really leaned into the people who could help me — family and friends. I really leaned into the people that I would see every day at these appointments, like the nurses, and had conversations with them. They might have tips for you, or even just flipping it and asking them how their day was, or what their favorite show is, or their favorite book. Just connecting with people through this process — when you feel less alone, it is a light at the end of the tunnel. It gives you hope.


Marina B. triple-negative breast cancer
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Categories
Chemotherapy Diffuse Large B-Cell (DLBCL) Metastatic Non-Hodgkin Lymphoma Patient Stories Treatments

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

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

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

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

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

Anna M. DLBCL

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

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

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

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

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

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



I’m Anna

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

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

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

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

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

Life before my diagnosis: new motherhood and business

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

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

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

Discovery: finding a lump postpartum

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

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

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

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

Diagnosis: from breast cyst to non-Hodgkin lymphoma

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

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

Really, truly, I didn’t notice any symptoms. Even when my blood work was drawn, it was relatively normal. There was no indication that there was cancer. It was really just that fast-growing, painless lump that I felt. Thank goodness I didn’t brush it off or just think, Oh, we’ll see what it does in a few weeks or anything like that. I’m really glad that people took me seriously when I showed, “Hey, I think this is a little abnormal,” because I know sometimes people will do that, and they’ll say, “Let’s just watch it for a little bit and see.”

My initial reaction and the silver linings

In a way, I thought our life was derailed at first. I was talking with a good friend from college the other day, and he was asking me all of these questions and really getting me to think about things I hadn’t thought about yet. I gave him back an answer, and then he said, “I’m not glad that you have cancer by any means. But I am so glad that you are you if this was going to happen to you.” I think what he meant is really just the way I have always just kind of been able to turn something into that silver lining to look for it.

Looking back, I’m just seeing all of these things that set us up for this diagnosis. Yes, we were in a sweet spot, but we were also so set up for this to happen. I bought a house right next door to my mom four years ago, so I have help right next door. I just had a baby, which is like the most joyful thing you can see every day. It reminds you that there is good even when bad is happening. As I said, I have the happiest baby. Anytime I would feel sadness or start to think about what was going on, I would look over, and he’s just smiling at me. It’s like, Okay, this sweet spot that we’re in, this place that we’re at, really sets us up for this to happen.

I also think in my family, not that I would ever want anybody to have cancer, but if somebody in my family was going to have to have it, I’m glad it was me. I feel like that sounds so weird to say, but it definitely feels like if it had happened to anybody else, it would have been harder emotionally for me. I’m looking at my family members and I’m like, I’m so sorry that you have to feel this because I know watching someone you love go through something like this is really hard. Being a mom now, I look at my mom and she’s been so positive and so helpful and so encouraging, but I know that there are times when it’s just really hard to watch your kid go through something like that. I can’t even imagine. My kid has a fever, and I’m like, The world is ending. So it’s definitely been a 180 from the sweet spot. But I know that it set us up to have the best experience that we could if something like this was going to happen.

Sharing the news with my family and friends

Telling people was really hard because I kept trying to find a convenient time. When I found out, I immediately went and told my mom and sister because they work close by. So I was able to get my kids in the car and drive to where they were. I waited until my husband got home that day because I didn’t want him to hear that news while he was in charge of other people’s kids. That is not a good time for that.

I definitely felt a lot of vulnerability and a lot of emotions and a lot of fear right away. You hear the words, and then you don’t know. I didn’t even know what lymphoma was before I was diagnosed. I didn’t know staging yet, or treatment, or what anything was going to look like. That was hardest for me: to not know what was going to happen and to just have so many questions. That’s when I think I showed a lot of my vulnerability and a lot of fear and anxiety. Everybody else kind of met me with their emotions, too, which I think was probably the best response to know. A lot of times, certain medical revelations or diagnoses can almost make you feel like you’re overreacting. When my emotions of fear and anxiety were met with the same, I was like, Okay, this makes me feel validated and like we’re ready to fight together. It was good to be met with that in the beginning. Once I started to know that there was a plan and it’s very treatable, I started to feel more positive, and then in turn, my family felt the same way.

As far as telling friends and other people, I was really nervous. I just didn’t want to inconvenience anybody or cause them to have a bad day. I was looking at people’s locations, like, Okay, are they at work? Are they at a friend’s house? I would text people and be like, “Hey, what are you doing?” And they’re like, “I’m just working. Why? What’s going on?” And I was like, “Oh, nothing. Just, you know, I have a funny story to tell you, but just let me know what you’re doing later.”

No one tells you how to break bad news to somebody else. I tried to make light in a lot of the ways that I told people. I’d be like, “Turns out I have cancer.” And my friends are like, “What? Wait, what did you just say?” And I’m like, “Yeah, I know, crazy, right?” Probably not the best way to do it, looking back, but you don’t know what to do. I had never had anybody personally break that news to me about them. I just really had no way to know how I should go about it. So, typical me, I tried to make it a lighthearted thing. Telling people was hard for sure. But once I started to, I felt like it really just helped me know how many people were on my team. And it was even further reinforced. Okay, I can do this. Like, there is nothing that I can’t handle with this village backing me.

It makes people feel better, too, if they have some facts, some information they can kind of hold on to. I had people who I knew were going to start Googling, and they’d end up on WebMD. I’m like, “This is what I know. Don’t Google it because it sounds scarier on Google than what the doctors told me. If you have questions, ask me, and I’ll make sure we address any concerns. Don’t go on Google.”

Understanding stage 4 DLBCL: the candle analogy

Initially, when I told my husband, he was terrified. The word cancer — he was like, “You’re going to die. This is the end of everything. This is the worst news.” I was like, “Okay, wait, let’s get some more information. We don’t know anything yet.”

We met with the doctor. Initially, it was before the PET scan. He did blood work and an initial exam, and he was like, “You’re not symptomatic. Your blood work looks really good. I think it’s probably stage 1 or stage 2. We’ll get your PET scan next Friday, and then you’ll come back and meet with me again, and we’ll get a plan.” He told me that he would not call me unless it was bad news.

I was the only one who knew that if he called, it was going to be bad news. Nobody else knew that. I was by myself that day because I had a PET scan, so I couldn’t be around my children. My husband’s taking them out to keep them away from my radioactive self. I get a call while I’m in the shower. I miss it, of course. It’s my doctor. He leaves me a voicemail, and he’s like, “Hey, give me a call back. I want to talk to you about your PET scan results.” I was like, Oh, crap. I immediately called back, and it was after 5:00. I don’t get him. I’m like, Oh my gosh, I’m gonna have to wait till Monday to know. I was trying to talk myself into… maybe he just wanted to tell me, “Stage 1, like you’re good.” But I knew he had said, “If I call, it’s probably just because it’s a little bit more serious.”

On Monday, a scheduler called me first, and they were like, “We’re going to move your appointment from Tuesday to Thursday.” I was like, “Why?” She said, “Well, insurance hasn’t approved your treatment yet.” I was like, “My treatment? I’m just supposed to meet with the doctor.” She was like, “No, no, no, you’re starting infusions on Thursday.” I was like, “Wait, what? What are you talking about?” She was like, “I think Dr. Lopez is going to call you soon.”

He called me shortly after, and he was like, “Hey, I just want to let you know. The PET scan came back. It is stage 4.” And he was like, “But blood cancer is different from tumor cancer.” He immediately told me that information. For anyone that doesn’t know, when you hear stage 4 lung cancer, that’s very different from lymphoma stage 4. That just means that there are lymph nodes that have the active cancer in them on both sides of the diaphragm. That’s stage 3. Stage 4 is also in somewhere other than a lymph node. I had a spot on my mediastinum and also a spot in my breast, which were not lymph nodes, and then a spot behind my abdomen.

He told me that, and he said, “The treatment changes only slightly. There’s one different chemo that we use from 1 and 2 to 3 and 4. The prognosis is still really good, almost the same. It hardly changes.” I had that information right away. I was like, “Okay, so this is different.” I tell my family, and they’re all still like, “Stage 4…” And I’m like, “No, no, no, listen.”

I tried to give the analogy — I just made this analogy up — and then I told my doctor, and he was like, “That’s actually really good. I’m going to use that.” I told my husband, “Think about a candle on a table, and you pour a bucket of water on the candle. The candle is going to go out. Now you fill the whole table with candles, and you pour the same bucket onto the table with multiple candles. All those candles are still going to go out. That’s kind of how the treatment is working. The chemo is going to go to all of the cancer just as efficiently as it would to one spot, stage 1, stage 2.”

He was like, “Okay, it makes me feel a little bit better.” Being super informed right away did kind of make that feel better. But it still did feel like, Oof, it’s kind of a little bit scarier than what we thought it was going to be. It just kind of felt like things kept happening like that, where we were like, Okay, we think it might just be this. And then it was like, Actually, it’s this. But we are still positive. We’re still hopeful. Treatment’s still going to be really good. I’m thankful that my doctor has the personality that he does. I told him from the get-go, “I am a hypochondriac and medically anxious, so you’re gonna have to give me all the information. You’re going to have to give it to me straight. No beating around the bush. No softening things. I want to know everything.” He was like, “Okay, sounds good.” And he has done that throughout.

Coping with hair loss and finding confidence

If you had told me, probably a year ago, that I was going to lose all my hair, I probably would have absolutely lost it, freaked out, just because it’s all I’ve always had. The long blond hair. It’s kind of been like, if someone didn’t know me, they would say, “Oh, the girl over there with the long blond hair.” You see me in a supermarket, you know it’s me for sure.

The doctor told me the first time we met that chemo was the treatment for lymphoma, no matter what stage, and that I would lose my hair because of one of the chemos. That’s just what it does. The “Red Devil” — I can’t remember the proper name for it at the moment. “That’s one of your chemos, and you will for sure lose your hair.” I asked him about cold capping, and he said, “You can do it. It’s not super successful. It’s not super great for lymphoma, especially with the breast presentation.” I had a higher likelihood of central nervous system involvement. So there was a treatment that needed to go all the way through, the whole body. He said it extends treatment, and it’s really expensive, not covered by insurance. I was like, “Okay, that’s fine, no worries.”

I was prepping myself from the very beginning, but something that actually helped me be okay with the fact that I was going to lose my hair — a lot more so than I thought I would have been — I watched The Great British Baking Show. Have you ever watched that? This season, the winner had alopecia, and she was open about that throughout the show. So she’s bald as well, doesn’t wear wigs or anything. She talked about that early on in the season. She said she used to wear wigs, and she doesn’t anymore. She’s really found her own style, confidence, and beauty. She was a med student on this baking show. Really successful, really good. I was just like, Okay, she has found the confidence to do this, and she looks wonderful. She’s unique, and she’s rocking it. Watching her prepped me. I was like, “If Jasmine can do it, I can do it.”

I was still a little emotional when I cut my hair because it’s always been really long. It’s really short. I don’t think it’s been that short since I was a little kid, and it was growing from my head for the first time. Shaving it obviously was a little emotional. My husband was shaving it, and he was like, “I’ve never seen your scalp.” And I was like, “I’ve never seen my scalp.” I was born with more hair than this. So it definitely was shocking and emotional. Sometimes I still forget that I don’t have hair, and I’ll see myself, and I’m like, Whoa, that’s me. I’m bald.

People are really kind about it and tell me, “You have a smooth head, like that looks pretty good.” Sometimes little kids will look at me, and I can tell they’re like, What’s going on there? And I just smile at them. I know that they just don’t know any different. It doesn’t bother me. It is a reminder for sure that I don’t have hair anymore. Making jokes out of it as well helps. I don’t know if you saw that video, just me being silly. But it definitely has helped me process losing it. I have a wig too, which I can wear sometimes. That was gifted to me by a really good friend. I’m thankful to have been prepped and to have different ways to make me feel best in my body, how it is right now, and to feel confident if I need them.

Parenting through cancer: navigating my diagnosis with my kids

My two-and-a-half-year-old would always play with my hair when I would hold him. He does the same thing with his own hair. He’ll play with it as he falls asleep. It’s always how we know that he’s getting tired. But when I would hold him, he would play with my hair and just kind of pull it and take the really long piece. He loved to brush it. He thought that was the most fun thing ever. So we were really nervous that he was going to look at me like, Oh my gosh, who is that?

We let him watch. He was with my parents. Both my kids were there when my husband shaved it. And when I cut it too, I thought, Oh no, he’s not gonna like that. Big change. And I think his response was, “Oh, mommy, you look cute.” He’s just the sweetest thing ever. Everyone was there. He got to see it being cut. I think that helped him to be like, Okay, I see it actually falling off. Mom’s getting a haircut. It put things in place for him.

When we actually shaved it, he was with my parents, and I put a hat on after it was done. So when he saw me for the first time, it wasn’t just a stark difference. Then he kind of noticed. He was like, “Mommy, where’s your hair?” I said, “Oh, well, buddy, I’m taking some medicine. And it made it all fall out.” He was like, “What? Where is it?” And I said, “It’s in the trash.” And he was like, “Oh, is it going to come back?” I was like, “Someday. Yes.” He said, “Can I see?” I was like, “Okay, sure.” I took the hat off, and I said, “Do you want to touch my head?” He was like, “Yeah.” And he just kind of rubbed. I was like, “Isn’t that so silly?” He was like, “Yeah.” And then that was it.

He didn’t talk about it anymore until I got a wig. I came home with a wig on, and he goes, “Are you a different mommy?” I was like, “No, the same mommy, just different hair.” He was like, “Your hair came back.” I said, “No, buddy, it’s a wig.” I took it off and showed him, and he said, “Oh, so pretty.” Anytime I put the wig on and come out, “Oh, mommy, you look so cute.” He has handled it beautifully. Better than I could have ever imagined. We were really nervous about that. One of my friends is a child life specialist, and she was like, “I need to talk to him. If there’s anything you want me to explain to him or talk to him about, let me know.” I was like, “Yeah, we might need to do that, especially with this big physical change that he can see because he can’t tell otherwise that something’s going on with me.” But no, he handled that great.

My youngest… I think he looked at me kind of funny the first time. Then I smiled at him, and it was like, Okay, that’s it. We’re good. Same mom. My wig is a little darker than my natural hair, so I’m sure he was like, Oh, there you are. That’s what I think when I smile, they’re like, Those are my mom’s teeth. All right. Cool.

There is some sweetness to it because it is a good distraction all the time. Anytime I’m feeling down about what’s going on, I have a great reminder of happiness and joy and lightness. Kids keep things so upbeat, and they kind of keep you busy enough that a lot of times you’re not really thinking about it anyway. But there have been some moments where I have just compared my experience with my youngest this time to my experience with my oldest. I didn’t have anything taking me away from being a mom to a newborn or to an infant before. Now I’ve stayed away from them longer than I ever have before. I had to stop my breastfeeding experience because of chemo. I’ve had to do bottles, and that’s been really different.

My husband has been really great about taking things on. He said, “I hate that this is why we’re doing this. But I’m really thankful that I’ve gotten an attachment to our youngest, Shepherd, so much earlier than Harrison, our older son. He was so much more attached to you for so much longer.” I’ve kind of had a different experience with him, which has been really cool for me. And then my experience has given me some independence sooner than I would have had with my oldest. So there’s been some goodness to the hard as well.

I had to stop thinking, Oh, I’ll be so glad when treatment is over. I’ll be so glad when I’m on the other side of this. If I can just get to being cancer-free, then I can start enjoying life again. I was thinking about that. I was like, Okay, so that’ll be next May or June if we stay on track with everything. I have a one-year-old and a three-year-old. I will have wished away the whole first year of my youngest son’s life. So again, they are really keeping me in that mindset of I still need to enjoy every single day, despite the hard stuff.

There are days when I’m tired and anxious, and I need to just kind of step away and take a moment. Luckily, I have a support system to be able to do so. But most of the time it’s a reframe. It’s just this constant flipping in my mind of feeling the anxiety, feeling the sadness from it, but then remembering, Look what you have right in front of you. Don’t let these other things that are going on take over the good parts of life that are happening right now, too. My husband even said at one point, “I hate that this is happening, but why did it have to happen when we have small children?” I was thinking the same. Why couldn’t it have happened before we had kids? And then I was like, Well, you know, now that I say that though, they make every day so much better, no matter how I’m feeling. Maybe if this was going to happen — of course, again, thank God it’s happening at this time because I do have these constant little smiles at me all the time. You can’t be upset when these little faces are smiling back at you. It’s been different, but so good to be able to have this experience and to be able to treasure them even more. Once you hear those words, cancer, you’re looking at things so differently.

Finding silver linings in adversity

For sure, getting out of the house with both of them helps. Even when I am feeling really tired, leaving the house helps with that a lot. Having family so close is really helpful, even just to get in a different space with another person, with the kids. It’s like, Okay, I’m remembering that we can be normal while these things are happening, too. My husband can be home anytime I am not feeling well. That’s really helpful too, to be able to know that I have certain days where if I need extra rest, I can take it. But for the most part, it’s like, Okay, this is my sweet spot to be with them.

I think prepping for the holidays, whether it be Halloween, Thanksgiving, or Christmas, has really helped as well to have those moments. I want to make this really magical for them. I want to make things exciting and happy for them. Filming my experience and sharing that has been really helpful, too, to just kind of talk about it to make it less scary for other people. I know it can be really daunting. Before I had my first PET scan, I was like, Oh, that sounds terrifying. I’m going to be in one of those little tubes and being enclosed. Things just seem so much more daunting when you don’t know anything about them. So that’s been really helpful too, to have that outlet. I’ve had so many people say things back to me like encouragement and say that, “I was just diagnosed and watching your videos, I hope that I can stay positive as well. Thank you for sharing. You gave me the courage to go and get something checked out.” Even though I have little kids, just things like that… just little reminders that when I am feeling positive and happy and absorbing those moments, it really is making a difference.

I think I gave you the little phrase, “There’s nothing that I can’t handle.” I think that I have learned that over this amount of time because I think I downplay who I am and what I do a lot of the time. Oh, I’m just a mom. Oh, I don’t work. I just stay home. Or I just help my husband with his business. I think dealing with something like this and just thinking, Okay, this is what happened. I’m going to face it head-on and keep being positive. I didn’t realize that I was doing something kind of different here or that I was taking such a positive take on it. When I first heard about cancer and realized what kind it was and how treatable it was, I was like, Okay, there are so many people dealing with heavier things. Things could be so much worse. I think I try to always look at things like that anyway.

Even after my first chemo, I didn’t feel super bad afterward. I was tired, but I was thinking, Okay, that was pretty smooth. I can do this for sure. But then I had friends and family members being like, “You have cancer. Like, this is a big deal.” Not everyone will experience that. I remember my husband telling me that after I had a C-section, he was like, “You are a lot tougher than you give yourself credit for, mentally, physically.” I’m a small, petite woman. I’m not super muscular or strong or anything like that. I don’t think of myself as tough. But I have realized, especially in the past few months, that I am pretty tough and there is a lot that I can take and a lot that I can handle. If I can go through this, there’s absolutely nothing that I can’t handle past that, which is a good reminder.

Sometimes it’s the little things in life that get to you, and then a big thing happens and kind of gives you perspective on, Okay, why did I get so upset in traffic? Or why did I let that sleepless night with my kids make me have a bad day the next day? That’s nothing. I faced this, now everything else seems so small. I’m really grateful to have that perspective now. I’m more resilient than I thought. I hate for anybody to have that tested with adversity, but I feel like that’s the only way you really know how strong you are, is for your strength to be put to the test.

I’ve learned how much people care about me, which is a really unique thing to get to actually hear from people. Once I was diagnosed and started sharing my experience, people reached out. I had a teacher that I had in high school reach out and tell me, “You were always one of the most positive students that I’ve had.” It’s really cool to be able to hear what people think about you. It’s kind of reminded me to do the same for others. If you feel like you want to tell somebody something about what they mean to you, do it, because you never know how it will make them feel.

Looking to the future: one day at a time

That was hard for me, and I felt that was going to be the hardest part: to think about things a few months out or even to think about life after cancer. I feel like I’m always going to be thinking, Is it back? Is something else going on? But I’ve heard a lot of people who have also had cancer or dealt with a large adversity: take it a day at a time. And I think that is the best advice that you could receive. Take it a day at a time, and when you take it a day at a time, it allows you to be more present in that day because you’re not thinking about the future.

So that’s really just a day at a time — sometimes a week at a time, if I know what’s going to happen a week from now. But I try not to push too far forward because I feel like I can kind of get a little bit too in my head if I think about the hospital days that are coming up, or if I try to just digest everything that’s going to happen. But if I take it a day at a time, I mean, I can handle that for sure. One, just one little day at a time. No big deal.

Advice for patients and loved ones

For anyone going through something similar or anyone loving someone who is going through something similar, there are no dumb questions. Getting a second opinion is great. Lean on people who love you and whom you trust. And if you are someone loving someone else going through something like that, show up and be present and show people that you care, even if you feel awkward or if you don’t know what to say. You don’t have to say anything. Just being there is so special and helps people know that they can do anything and they can handle anything.


Anna M. DLBCL
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How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit

When Amina was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021, her life as a 21-year-old dancer in New York City turned upside down. She had been training in school while navigating the pandemic when her health began to slip in confusing ways. At first, she thought it was stress, COVID, or exhaustion. But when she couldn’t climb stairs without feeling faint, woke up drenched in night sweats, and lost her appetite, she knew something was wrong.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

Unfortunately, getting answers wasn’t easy. Without a primary care doctor and stuck between pediatric and adult care systems, her diagnosis was delayed for months. She had to advocate fiercely for herself, even paying out of pocket for scans when appointments kept falling through.

Amina V. stage 4B Hodgkin's lymphoma

Eventually, an MRI and biopsy confirmed what doctors had been circling around: Hodgkin lymphoma. Hearing the official words was scary but also validating. For months, Amina had felt invisible in the healthcare system. Finally, someone acknowledged her pain and gave her a path forward. Her oncologist at Johns Hopkins immediately recognized the seriousness of her case, which gave her a sense of trust and relief.

Amina’s treatment lasted seven months and included intense chemotherapy. While she was grateful to receive care as an outpatient, the physical and emotional toll was heavy. She lost her hair, felt disconnected from her body as a dancer, and struggled with neuropathy in her feet. She also wrestled with body image challenges while trying to keep up with the demanding culture of dance. Still, she leaned into small joys, like having ice cream when nothing else tasted good, and gave herself space to rest when she could.

Being so young in a cancer ward was isolating, but Amina refused to stay silent. She began sharing her story on social media, connecting with other adolescents and young adults (AYA) navigating cancer and health inequities. Many reached out, saying they felt like they slipped through the cracks. What started as venting grew into a form of advocacy, helping others feel seen.

Amina’s family, friends, and community were her anchors. Friends showed up with flowers, trips, and support; her parents carried her through appointments and recovery. Later, when her father was diagnosed with acute myeloid leukemia, she was able to use her experience to help him access care quickly.

Now in remission, Amina embraces what she calls “thrivership” — living with intention, protecting her energy, and finding happiness wherever she can. She wants other young people with cancer to know that life doesn’t have to follow a strict timeline. Progress may look different than planned, but with patience, connection, and self-advocacy, it’s still possible to create a fulfilling and beautiful life.

Watch Amina’s video or read the interview transcript below to find out more about her story:

  • From dance rehearsals to chemo infusions, Amina shares the raw reality of being young with cancer
  • Why social media became her lifeline during treatment
  • The surprising way her cancer diagnosis helped her father
  • How survivorship reshaped her priorities and sense of joy

  • Name: Amina V.
  • Age at Diagnosis:
    • 21
  • Diagnosis:
    • Hodgkin Lymphoma
  • Staging:
    • Stage 4B
  • Symptoms:
    • Severe fatigue
    • Shortness of breath
    • Night sweats
    • Bloating and stomach distension after eating
    • Abdominal pain
    • Little to no appetite
    • High fever
    • Lump in the pelvic area
  • Treatment:
    • Chemotherapy
Amina V. stage 4B Hodgkin's lymphoma
Amina V. stage 4B Hodgkin's lymphoma
Amina V. stage 4B Hodgkin's lymphoma
Amina V. stage 4B Hodgkin's lymphoma
Amina V. stage 4B Hodgkin's lymphoma
Amina V. stage 4B Hodgkin's lymphoma
Amina V. stage 4B Hodgkin's lymphoma

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

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



Hi, I’m Amina

I was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021.

I’m originally from Washington, D.C., but I live in New York City now. I’m a professional dancer, so that’s my 9 to 5. When I’m not performing, I also work as an educator and rehearsal director for young artists and teaching dance. Dance is my number one love and my number one passion, and it’s also what I do for fun.

My friends would say that I’m a bubbly person. I’m definitely very friendly, and when I’m out with my friends, I’m very outgoing. I like to have a good time, try new things, and new experiences. Above all else, I always like to show up for my friends and the people I love and who love me. I believe in loyalty and having each other’s back.

There’s a special photo that stands out to me right now, which is a picture of me and my dad at Light the Night, which is an event by The Leukemia & Lymphoma Society, now called Blood Cancer United. Then Leukemia & Lymphoma Society would hold an event for cancer survivors and honorees, like advocates in the cancer community, and I was there with my dad and they were honoring me. But at that time, he was also about to find out that he had acute myeloid leukemia, so it was a moment that symbolizes me finishing my journey and him starting his. Looking back, it’s crazy and special.

When something first felt off

I first found out I was sick in my final semester of training. I went to The Ailey School for four years. It’s conservatory-style training, pretty much at the highest degree, preparing you for a professional career as a performer. It was also during the COVID-19 pandemic, in the fall of 2020, and everything was messed up. We were in masks. Everyone thinks that a cold could be COVID. I had been feeling off for a while, but I chalked it up to flu season. It’s COVID. I have to quarantine. But then when I went back to school and my regular routine of five classes a day, I found that I was super fatigued at the end of the day. It wasn’t the regular kind of tiredness. I couldn’t go up one flight of stairs. And in New York City, you’re walking everywhere all the time. I have to walk up the stairs in my apartment building and walk up the stairs to go to the subway. Tthere were some days where I felt like I was going to pass out. That was red flag number one. 

The second red flag was night sweats. I would wake up in the middle of the night and my clothes would be drenched and my bedsheets were wet. I would always joke and say it was menopause, but I was 21, so this was not menopause. Why am I getting hot flashes in the middle of the night?

The third red flag was I had little to no appetite, and whenever I did eat, my stomach would swell and distend, so much. I would have cereal in the morning and you would think I went to an all-you-can-eat buffet. Then I would have to go to class and be in a leotard and tights with a bloated stomach. It felt awful.

I first noticed these symptoms in December 2020. I got it checked out in 2021, around early January and February. But they continued until my treatment started, which I didn’t start until August.

There was a big delay in my diagnosis

There was a lot of trial and error. I didn’t have a primary care physician. I was there for school, so I relied on minute clinics. But the one doctor I had a good relationship with was my OB-GYN. I felt a lump in my pelvis, which I thought might be a cyst, so I went to her. She recommended getting an ultrasound and doing bloodwork, and that’s when we found that my blood levels were off the charts. She passed me along and pretty much said, “This is out of my jurisdiction. However, I highly recommend you get an MRI and take this to a hematologist.” That then led to months and months of trying to get appointments  because this was in 2021, so getting a doctor’s appointment was difficult in the city.

I learned that if you’re not 22, you’re still considered pediatric. I was making appointments at grown-up doctors’ places because I thought I was a grown up, and then they would get canceled because my insurance was saying I was still a kid, so I needed to go to the children’s hospital. I think that led to a lot of delays in diagnosis  because I wasn’t officially diagnosed until July.

I ended up having to take matters into my own hands and get an MRI at an out-of-network clinic, and that’s when they found the inflamed lymph nodes. But from there, I had to wait another month or two for a biopsy appointment. In between that time, my symptoms got increasingly more aggressive. I ended up being hospitalized  and that’s when they told me that I might have cancer.

My boyfriend was with me at that time. We were living together during this whole process. My parents had also been aware that I’d been sick and they’d seen the MRI results, which showed the inflamed lymph nodes. Everybody seemed to have a clue that I possibly had lymphoma, except for me, because I didn’t know what that was. Everyone was on high alert. I had a fever of 104℉ one night, so my partner took me to the emergency room.

I was stressed and afraid. However, it got to a point where it’s like, “Look. This is my last semester of school. I’m still dancing in a mask. We’re in boxes, social distancing. I either have to think about whether I want to finish strong so I could potentially get the job or take care of my health and set myself up for the long term.” That was the decision I ended up making. I would miss a lot of classes because I had to go to doctors appointments or I would try to be as transparent as possible with my teachers, sharing the information I have, and letting them know that I wasn’t at 100% and I don’t know why, but that I’m doing my best.

I’ll be honest, advocating for myself didn’t come easy to me. I was trying to do everything the right way, following the doctor’s orders, listening to my parents, and waiting. But when, time and time again, doing things by the book was not working in my best interest, that’s when I said, “I need to get this done. Where in this city can I get an appointment tomorrow? And if it costs a lot, then that’s just the price I have to pay, but I need to know something.” The waiting was driving me crazy.

I got treated in D.C. That came about because of all the hoops I had to jump through on my own in New York. I was young. My boyfriend was also young at the time, so it was a lot for us to manage on our own. My parents wanted me to move back home and get treated there so that they could help.

How I found my care team

It was a very fast-moving process because everything took so long that we tapped into our family and friends resources. I was very fortunate that my mom had a cousin who worked at Johns Hopkins and she helped with speeding along the process of getting an appointment and getting all of my pathology from New York passed along to the hospital in D.C. so that I can be seen and treated quicker.

When I met my oncologist, he was the first doctor who validated how I felt. They kept saying I might have lymphoma and the whole hesitancy to be transparent with me was that I was young, so they didn’t want to be negative or dampen the mood too soon without having all of the answers. I understand that perspective, but I felt like I was dying. For them to say that it might not be anything that serious sucked because what, was I going crazy? I knew I wasn’t. But he was the first one to look at me and say, “Yes, you are very sick. Yes, this is 100% lymphoma. We’re getting your pathology. However, you’re checking all the boxes and we need to get you started next week.”

I ended up trusting him 100% because he looked at me, did the exam, looked at my reports, and shared in my frustration. Even without the pathology to 100% confirm it, everything else lined up with a patient who has Hodgkin lymphoma. The outlier was how young, active, and healthy I was. Besides that, everything else made sense.

The fact that he shared that frustration and validated how I was feeling made me feel close to him and made me pretty much trust him with my life because that’s what you’re doing when you’re choosing an oncologist.

When I heard the words “you have cancer”

I was very emotional. It was a relief to have an answer. I remember having a little bit of jitters or goosebumps because it’s a tough reality to face. However, on the flip side, it was nice to have an answer to all the questions that I had swirling around in my head for months. I’m not immunocompromised. It isn’t COVID or the flu. This is exactly what it is and here’s how we’re going to treat it. Having that clarity helped me find peace, oddly enough. I know I was going into the hardest thing I was ever going to have to do in my life and that some people don’t even have to face thankfully, yet I felt calmer having that clarity.

What my treatment plan looked like 

I had to do seven months of chemo. It was rough. Chemo sucks. It literally zaps you of any energy. However, in the beginning, I think after my third cycle, I was tired, but feeling better. It was the necessary evil that I had to go through in order to get cured. It’s just hard. Especially since the treatment plan that I had included a specific drug that causes bone pain and another drug that makes you lose all your hair, so it’s tough. I felt like I was losing parts of myself in a sense. I didn’t have any energy. I didn’t want to socialize with people. I wanted to be alone after my infusion days. I would get treatment once a week and then I would have a week to recover. On my off weeks, I felt a little better every time. Every off week, I was getting stronger and stronger and stronger. At the moment, it’s not fun at all, but then the results are worth it.

I was fortunate enough to be an outpatient. I would be in the hospital for a full workday, around 6 to 8 hours a day, and then my dad or my mom or whoever was there with me would take me home.

They gave me this body patch and it would administer medication at home as well.

Managing the side effects of chemotherapy

I developed neuropathy in my feet, which was a tough part of recovery, especially since I need them for my profession. After a few months, I was able to start dancing again. I was even ambitious enough to try and take classes every now and then while I was still getting treatment. It wasn’t at the level I was before I got sick — that took a lot of time — but I was fortunate enough to have a mentor who gave me a space to quite literally fumble around and reconfigure myself. I appreciate her for that because I think that allowed me to get to where I am today.

I didn’t like the way food tasted, which was a big one. I didn’t want to eat anything except Ben and Jerry’s ice cream. My parents would be so concerned, saying I couldn’t eat ice cream because it’s sugar. I said, “Mommy, I have blood cancer. It’s different. And the doctor says I need to put weight back on, so I should eat lots of ice cream.” That was the only thing that I could taste, something sweet

With the chemo, they gave antiviral medication and that made me very agitated. I appreciate my family for being patient with me during that time because I’m sure I was being a diva. Being on different medications puts you in a loopy state. There were a lot of people who visited and were with us in the house, and though I wanted to be social, at a certain point, I would get drained and shut off. Even after I finished, for a few months, I would find that still happening. It’s like this fog went over my brain. My eyes were glazed over and I completely checked out.

It was hard, honestly, because I felt like I had to fake it and make it seem like everything was okay. I didn’t have an explanation at that time as to why I felt awful or uncomfortable. As a young dancer, I was struggling with body dysmorphia. I had to stand for an hour and a half in front of the mirror and even though all I had was cereal for breakfast, I’m bloated and my clothes don’t fit right. I feel uncomfortable, but I still have to go through my day pretending like everything is okay. I have to show up and give the teacher energy.

There was even one moment when I did this photo shoot and the photographer was frustrated with me because I was very quiet and timid, and it was coming through in the photos; in reality, I was just exhausted. I felt tired and everything about being in that space was draining in the moment. It was tough because my job and what I was doing in school was so physical, so there’s no way to dial it back. I either have to push through and push myself to the limit, which often happens. That’s how I got hospitalized. Or I give up and I’m not good at giving up.

How I navigated having cancer so young

I was the only young person in the infusion ward. Whenever I would go, people always thought my dad was the patient, but he was bald by choice and I wasn’t, so that felt isolating

Beyond that, I had just finished school in New York and was building my own life. I just got my own apartment and then I had to leave it all behind and go back home. In a lot of ways, it felt like I was going back in time, like going back to square one. For a little bit, it did break my spirit. I felt defeated. I relied a lot on finding ways to entertain myself and fill my time. Being Gen Z and in my 20s, TikTok and Instagram were my coping mechanisms.

What I think was unique about me being a young person with cancer is I made the choice not to suffer in silence, so I told my friends about it and posted on social media about it. Through that, I was able to find a community of people going through similar experiences at my age. Even though they weren’t physically there with me, I found them online.

When I was in treatment, I was connecting with a lot of people who were asking about my experience and asking for advice for themselves or for loved ones. Even if they didn’t have cancer and were dealing with other health issues, they would ask, “How did you push through? The doctors keep telling you no or to come back when it was worse than it is now, instead of treating you.” By sharing my experience, it opened a can of worms on the fact that a lot of young people, regardless of a cancer diagnosis or not, have this issue where we slip through the cracks of the healthcare system, whether we’re still on our parents insurance or not, and we’re still treated as kids even though we handle all of our own finances and do things on our own. Or we just got booted off our parents’ insurance, so now what do we do?

Through that, I connected with a young woman who was in India getting treated for breast cancer. She was thanking me for sharing my story because she was 30 and she thought that she was the only person dealing with this. I also found a lot of other nonprofits for women like me or young people like me who feel isolated and connect them to each other. What I thought was just me venting turned into a form of advocacy, so when I saw that there was this interest and need for connection, I stuck with it and have met so many beautiful people because of it.

It’s important to have these conversations so that other young people can learn from my “mistakes.” I don’t want to say mistakes because I didn’t know, so by sharing, it hopefully gives others information so that they are more informed and knowledgeable, and feel empowered to speak up for themselves and not take things in blindly.

The hardest thing was accepting that everything was going to change. Not just biologically, but even around me, things were going to change, and a lot of those things would be permanent. My relationships with people, with friends whom I had in New York, and with my community would shift — some for the better, some not so much. I also felt like the world was moving on without me, which was a scary feeling. I needed to focus on getting better, but also, what does life look like outside of this? In that moment, the most frightening thing was the unknown and the change.

I was a little lucky to have had family members who had battled cancer in the past, even though it was in a different form. I have a cousin who is a breast cancer survivor and took her experience of being diagnosed in her 30s and turned it into advocacy, so I had her as a role model. This is hard. Everything is going to change. However, you will come through fortified and stronger. In the moment, it’s hard to believe when people tell you good things and they give you advice. You want to take it all in, but there’s a little voice in your head that says, “I don’t know.” Having her guidance definitely helped a lot.

I had to have trust because in that instance, there’s nothing I could control. My body literally woke up one day and said, “We’re going to shake things up,” and there was nothing I could do about it. Once that switch is flipped, I have to take the necessary steps to fight. I know sometimes that can be tough for people, but I’m comfortable with the fact that I had to battle cancer because it’s literally a war inside my body. I either make the choice to take steps against it or not. I feel like you have to fight against it, not just with how you treat it, but also with your mindset and your mentality. Hope and positivity and a little bit of delulu were all I had.

The sky isn’t even the limit anymore because I’ve been faced with my own mortality. I thought that my life was going to be cut short at 20-something. I’m 26 now and have a whole lifetime ahead of me, so I’m going to do everything I possibly can.

My support system helped get me through the hard days 

I have an amazing family that came together to support me during this time, even our community in DC showed up, like my parents’ friends who supported them. I think it’s important for caregivers to also receive support. When I don’t have the energy to greet people, they were still there for my mom and my dad, which made me happy because they’re struggling with this, too. Even though I’m the one who’s actually receiving the medication, they are invested emotionally and financially, and sacrificing their time to be there for me, so I’m glad that they also received support.

Most importantly, I saw who my friends were. Being in New York, there are millions and millions of people here. I like to talk to people, make friends, and hang out. I have friends who took me to a resort while waiting for my pathology report. We had a vacation planned and I said I couldn’t go because I had cancer. She asked, “What are you doing during the week while we’re gone?” I told her I was going to cry in bed at home. She said, “No, we’re going to go,” and she took me to the Dominican Republic. The week after, I had to go to D.C. I had two other friends who would send flowers to my parents’ house and who drove from New York to visit me. It showed me, even when I can’t be there for them the way I want to, that they’re still there for me and it was so beautiful.

What survivorship means to me

Survivorship, or thrivership as I like to say, honestly looks like finding my happy. I try to find happiness and joy in any scenario, living and loving life to the fullest, not putting any limitations on myself, taking care of my health physically, mentally, and emotionally, and protecting my energy.

I found that I don’t need to please people. I don’t need to overextend myself. I don’t need to do things that I don’t want to do or that don’t serve me. Surviving cancer taught me that. A lot of people say, “Wow. I feel like you’ve grown so much.” I just got a reality check. I got a true sense of what matters and how I want to spend my time on this earth.

What I want others to know 

Even when it’s hard, it does get better. You don’t necessarily have to rely on things outside of yourself to make it better. Finding what brings you joy and calm is what’s most important, even when you’re going through the hardest or scariest time of your life.

Specifically for AYA cancer patients or young people in general, setting this deadline or checklist for yourself of when and how things need to be accomplished is hindering you from going for it. I had a set plan. I was going to go to this school, graduate, get into this company, and complete these things by this time. When it doesn’t happen, you feel defeated. You feel like you’ve lost, when in reality, it could just be a few more steps away and you just have to keep going. In the arts industry, but also in life in general, I feel like we’re all in a queue. You either decide to stay in the line and see it through, or you get out right before the thing you’ve been dreaming of is about to happen. Youth is a blessing, but we also don’t need to accomplish everything right away. If we stick to it, find our happiness, and keep fighting, then you will achieve everything you put your energy into.

How often I’m monitored

I was being monitored every other month and then every three months. Now it’s every six months. Everything’s been good so far. My doctor has been conservative with the checkups because I’m not doing it with a PET scan, which I think is the traditional way. Because of how advanced my cancer was, I didn’t have the luxury of time to do any fertility preservation, so he wants to limit my exposure to radiation as much as possible.

My dad was diagnosed with cancer after me

It was shortly after I had finished chemo. He started experiencing symptoms and then he was diagnosed almost exactly a year after I finished.

He chalked it up to him getting older. I went through all the hardship I had to go through to help him. AML in your 60s could be a death sentence. Thankfully, there has been a lot of development and research into it, so that it’s treatable now. I can’t imagine what it would have been like if he had to jump through six months of hoops like I did.

In our case, he called me and told me what was going on, asking my thoughts on it, and sharing his experience. I texted my doctor and asked, “Can I send you my dad’s charts? Because it looks scarily similar to what I had. Can he come and see you?” He was able to go the following week.

Some people say, “I would be so upset. How can you stay so positive when all this is happening back to back to back?” I took it as what I went through was not in vain because it’s literally helping my father right now get the treatment he needs and what he deserves. Now he’s still here and in remission. Being in remission and being a survivor doesn’t mean everything’s all rainbows and sunshine, but we both made it through, so for that, I’m grateful.


Amina V. stage 4B Hodgkin's lymphoma
Thank you for sharing your story, Amina!

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Categories
Acute Lymphoblastic Leukemia (ALL) Chemotherapy Leukemia Lumbar puncture Patient Stories Radiation Therapy T-cell Acute Lymphoblastic Leukemia (T-ALL) Treatments

Lauren’s T-cell Acute Lymphoblastic Leukemia (T-ALL) Treatment Story

How Lauren Found Clarity Beyond T-cell Acute Lymphoblastic Leukemia (T-ALL) and Treatment Challenge

Lauren, who hails from Ohio, was diagnosed with T-cell acute lymphoblastic leukemia (T-ALL) in May 2022, a twist she never saw coming. What started as a typical cold spiraled into severe symptoms, including persistent cough, chest pain, and fever, which led to multiple doctor visits and misdiagnoses. Eventually, a chest X-ray and CT scan revealed an enormous mass near her heart, which rocked Lauren’s world. Her cancer diagnosis came swiftly, delivered bluntly by an oncologist who had little bedside manner.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Adjusting to life with cancer was overwhelming. Lauren faced intensive treatments, including lumbar punctures, rounds of brain radiation, and weekly chemotherapy. The treatments caused dramatic physical changes, including hair loss, neuropathy, and severe nausea, which challenged her daily comfort. Yet, amidst the chaos, Lauren found clarity. She decided to stop drinking alcohol, embraced a more balanced approach to health, and left a business venture that no longer aligned with her values.

Lauren M. Acute Lymphoblastic Leukemia

Mental health played a significant role in Lauren’s recovery from T-cell acute lymphoblastic leukemia. She sought help from a palliative medicine doctor, not just for physical symptoms but for emotional support, too. Accepting this help was transformative, providing better management of her anxiety, depression, and physical side effects.

Lauren’s message is powerful: healing isn’t linear, and facing tough days is okay. She encourages others to focus on one day at a time, embrace the good moments, and reach out for support when needed. Her story underscores the importance of advocating for oneself, mentally and physically, during and after cancer treatment.

Watch Lauren’s video to discover:

  • How a common cold led to a life-changing T-cell acute lymphoblastic leukemia diagnosis.
  • Why Lauren says cancer became an unexpected blessing.
  • The role of mental health and palliative care in cancer recovery.
  • How leaving a business she co-owned helped Lauren find clarity during treatment.
  • How Lauren coped with T-cell acute lymphoblastic leukemia, one day at a time.

  • Name:
    • Lauren M.
  • Age at Diagnosis:
    • 33
  • Diagnosis:
    • T-cell Acute Lymphoblastic Leukemia (T-ALL)
  • Symptoms:
    • High fever
    • Trouble breathing while lying flat
    • Bad cough
    • Headaches
  • Treatments:
    • Chemotherapy
    • Radiation
    • Lumbar puncture
Lauren M. Acute Lymphoblastic Leukemia
Lauren M. Acute Lymphoblastic Leukemia
Lauren M. Acute Lymphoblastic Leukemia
Lauren M. Acute Lymphoblastic Leukemia
Lauren M. Acute Lymphoblastic Leukemia

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.


Lauren M. Acute Lymphoblastic Leukemia
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Lauren M. T-cell Acute Lymphoblastic Leukemia

Lauren M., T-Cell Acute Lymphoblastic Leukemia (T-ALL)



Symptoms: High fever, trouble breathing while lying flat, bad cough, headaches

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Christine M., Acute Lymphoblastic Leukemia (ALL)



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Renata R., B-Cell Acute Lymphoblastic Leukemia, Philadelphia chromosome-positive (Ph+ALL)



Symptoms: Fatigue, shortness of breath, nausea, fevers, night sweats
Treatments: Immunotherapy, chemotherapy, TKI, stem cell transplant (tentative)

Categories
Chemotherapy Metastatic Non-Hodgkin Lymphoma Patient Stories Treatments

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy’s Stage 4 Non-Hodgkin Lymphoma Story

Sandy was diagnosed with stage 4 non-Hodgkin lymphoma in 2024. Her initial symptoms included persistent coughing, weakness, and shortness of breath. After weeks of worsening symptoms and ineffective treatments, an MRI revealed a large mass in her chest, which eventually led to the collapse of her left lung due to a massive tumor. A biopsy confirmed the diagnosis of lymphoma, a cancer that Sandy later described as a blessing in disguise due to its responsiveness to chemotherapy.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Treatment began immediately, consisting of six intense rounds of chemotherapy, each lasting five days in the hospital followed by two weeks of recovery at home. The process was physically and emotionally grueling, marked by extreme fatigue, weight loss, and hair loss. Despite these challenges, Sandy focused on mental resilience, which she believes was critical to her survival. She emphasized the importance of maintaining movement, even during the most debilitating moments.

Sandy D. feature profile

To cope mentally with stage 4 non-Hodgkin lymphoma, Sandy turned to spirituality, meditation, and writing. She frequented a meditation garden where she found solace. Writing became a therapeutic outlet, leading to the creation of her book, Cancer Ramblings. Writing helped her process her experience and turn her pain into purpose.

Sandy celebrated her remission as a profound moment of liberation and gratitude, describing it as a second chance at life. She plans to monitor her health closely while maintaining a conscious lifestyle. She views sharing her story as a way to inspire others, providing hope and comfort to those facing similar challenges. Her key advice is to visualize a positive outcome and hold onto it as a guiding light through the darkest moments. Sandy’s enduring image was of herself running on the beach—a vision she ultimately realized.


  • Name: Sandy D.
  • Age at Diagnosis:
    • 45
  • Diagnosis:
    • Non-Hodgkin lymphoma
  • Staging:
    • Stage 4
  • Symptoms:
    • Persistent coughing
    • Weakness
    • Shortness of breath
  • Treatment:
    • Chemotherapy (six rounds)
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.
Sandy D.

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.


Sandy D. feature profile
Thank you for sharing your story, Sandy!

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Aleeshia T. stage 4B Burkitt lymphoma

Aleeshia T., Burkitt Lymphoma, Stage 4B



Symptoms: Severe fatigue, deep shoulder pain, ear pain with inflammation, abdominal and pelvic pain, bloating, early fullness, nausea, difficulty eating, inability to urinate despite feeling an urgent need, internal bleeding, delayed period/bleeding, intense whole‑body pain leading to collapse

Treatments: Surgeries (emergency laparoscopic surgery with left ovary removal), chemotherapy (R‑CODOX‑M/IVAC), immunotherapy, hormonal therapy (to protect the remaining ovary)
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Stephanie V.

Stephanie V., Primary Mediastinal (PMBCL), Stage 4

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Sandy D., Non-Hodgkin’s Lymphoma, Stage 4



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Sammie F., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4
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Relapse Symptoms: Swelling in leg, leg edema Treatments: R-CHOP chemotherapy, clinical trial (venetoclax-selinexor)
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Paige C.

Paige C., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Weight loss, extreme fatigue, swollen lymph nodes in the neck
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Ashley P. stage 4 DLBCL

Ashley P., Diffuse Large B-Cell Lymphoma (DLBCL), 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
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Nolan W. feature profile

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Symptoms: Debilitating fatigue, flu-like symptoms without a fever, swollen lymph node under the left arm

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Nina L., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



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Headshot of Nicky, who's living with stage 4 follicular lymphoma
Nicky G., Follicular Lymphoma, Stage 4
Symptoms: Fatigue, weight loss, lumps in the neck and groin

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Symptom: Persistent, significant back pain

Treatments: Surgery, chemotherapy
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Mags B., Primary Mediastinal (PMBCL), Stage 4



Symptoms: Exhaustion, migraines, persistent coughs, swelling and discoloration in left arm
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Luis V., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Persistent cough, fatigue, unexplained weight loss



Treatment: Chemotherapy (R-CHOP and methotrexate)
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Symptoms: Frequent sinus infections, dry right eye, fatigue, lump in abdomen

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Kris W., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Pain in the side of the abdomen
Treatment: R-CHOP chemotherapy
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Kim S., Follicular Lymphoma, Stage 4 (Metastatic)



Symptom: Stomach pain
Treatments: Chemotherapy (rituximab & bendamustine), immunotherapy (rituximab for 2 additional years)
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Symptom: Severe shoulder pain

Treatments: R-CHOP chemotherapy, methotrexate, focal radiation, autologous stem cell transplant
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Symptom: Swollen lymph nodes

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Symptoms: Hives, inflamed arms



Treatments: Calabrutinib, Lenalidomide, Rituxan
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Symptoms: Persistent, high fevers; red, tender rashes on legs
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Anna M. DLBCL

Anna M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: a rRapidly growing, painless lump on the breast

Treatment: Chemotherapy
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Erin R., Diffuse Large B-Cell Lymphoma (DLBCL) & Burkitt Lymphoma, Stage 4



Symptoms: Lower abdominal pain, blood in stool, loss of appetite
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David shares his stage 4 follicular lymphoma diagnosis
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Cindy M. feature profile

Cindy M., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptoms: Itchy skin on the palms and soles of feet; yellow skin and eyes
Treatment: Chemotherapy (R-CHOP)
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Cherylinn N., Mantle Cell Lymphoma (MCL), Stage 4



Symptom: None



Treatments: R-CHOP chemotherapy, rituximab
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Bobby J., Mantle Cell Lymphoma (MCL), Stage 4



Symptoms: Fatigue, enlarged lymph nodes
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Barbara R., Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4



Symptom: Abdominal and gastric pain



Treatments: Chemotherapy R-CHOP, CAR T-cell therapy, study drug CYT-0851
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Ashlee K. feature profile

Ashlee K., Burkitt Lymphoma, Stage 4



Symptoms: Abdominal pain, night sweats, visible mass in the abdomen

Treatments: Surgery (partial colectomy to remove 14 inches of intestine), chemotherapy
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