Tiffany, a 38-year-old mother of 4, has stage 4 bile duct cancer or cholangiocarcinoma, also known as liver cancer. In April 2024, she experienced severe left flank pain, which led her to seek medical attention. A CT scan at the hospital revealed a mass on her liver, initially suspected to be colon cancer. Further tests, including an MRI, PET scan, and liver biopsy, confirmed the diagnosis of cholangiocarcinoma that had spread to her spine.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Following the diagnosis, Tiffany began receiving treatment. Her oncologist initiated a combination of chemotherapy and immunotherapy, alternating between therapies weekly, with a rest period every 3 weeks. Despite initial radiation treatments failing to shrink the tumor on her spine, targeted radiation was applied to her liver, followed by spine surgery to remove most of the tumor. Recovery was challenging, requiring a week-long hospital stay, physical therapy, and the use of a walker and cane at home.
Subsequent treatment involved ablation surgery to address new lesions on her liver. Tiffany resumed chemotherapy and immunotherapy, experiencing side effects such as back pain, headaches, and nausea. As her treatment continued, she received support from her medical team, including a liver specialist in Baltimore.
Mentally, Tiffany struggles with anxiety and the fear of leaving her family. She takes anxiety medication to help cope, though the emotional toll remains significant. She stresses the importance of self-advocacy, sharing her story to raise awareness about cholangiocarcinoma and stressing the importance of regular medical check-ups.
The ongoing battle with cancer challenges Tiffany physically and emotionally, but she remains determined to see her children grow up. Her story serves as a reminder to pay attention to one’s health and advocate strongly for oneself in the face of medical challenges.
Name:
Tiffany J.
Age at Diagnosis:
38
Diagnosis:
Liver cancer (cholangiocarcinoma)
Staging:
Stage 4
Initial Symptoms:
Left flank pain
Treatment:
Radiation
Chemotherapy
Surgery
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Amy, a 52-year-old art teacher living in upstate New York, shares her journey after being diagnosed with a rare appendix cancer, low grade appendiceal mucinous neoplasm (LAMN) in May 2023. Although she had a history of stomach issues, diagnosed as IBS, Amy decided to undergo medical checkups due to past experiences with her father, who passed away from leukemia when she was 15.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Amy’s story began with a routine colonoscopy in February 2023, during which doctors discovered a small bulge in her appendix. Although it was initially deemed non-threatening, a follow-up CT scan revealed appendiceal nuclei, prompting her to undergo an appendectomy in April 2023. Though the procedure appeared to be successful, Amy anxiously awaited the pathology results.
Soon afterwards, Amy learned she had appendix cancer, the same rare condition her sister-in-law had been diagnosed with, leading her to Memorial Sloan Kettering in New York City. As she adapted to this unexpected turn, Amy sought support through a Facebook group for appendix cancer patients. There, she discovered the rarity and complexity of her condition, often misdiagnosed as ovarian cancer among women.
At Memorial Sloan Kettering, Amy underwent a significant surgery in June 2023. Her slow-growing cancer meant she did not receive the CRS-HIPEC treatment, common for appendix cancer. Fortunately, her prognosis was better than her sister-in-law’s due to differences in pathology. Her PCI score, used to assess cancer spread in the abdomen, was a low 3, indicating minimal spread (scores range from 1-39, PSOGI).
Amy now faces regular scans every few months to monitor her condition. Her outlook on life has shifted, embracing her present rather than fearing an uncertain future. Despite being at stage 4, Amy remains positive, focusing on living without fear while cherishing smaller joys.
Amy advocates for listening to one’s body and acting promptly on health concerns, emphasizing that time is crucial with cancer diagnoses. Her experience underscores the importance of thorough research, finding emotional support, and demanding the necessary care, like physical therapy, to maintain quality of life. Her journey highlights resilience in the face of rare cancer, stressing the importance of early detection and proactive health management.
Name:
Amy M.
Age at Diagnosis:
51
Diagnosis:
Appendix cancer (low-grade appendiceal mucinous neoplasm [LAMN])
Staging:
Stage 4
Initial Symptoms:
Irritable bowel syndrome
Treatment:
Surgery (appendectomy)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Rachael, a 34-year-old mother of three, shares her experience with stage 4 sigmoid colon cancer, which has spread to her ovaries and liver. Her journey began unexpectedly when she visited the emergency room due to severe stomach pain. After undergoing a CT scan, she was abruptly informed of her diagnosis, a moment that left her in disbelief and shock. Despite this, Rachael quickly shifted her focus to taking control of her treatment, scheduling procedures like a liver biopsy and partial colectomy. She underwent emergency surgery with the help of robotic technology, which included a total hysterectomy and the placement of a colostomy bag.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Rachael describes the difficult emotional decision to undergo a hysterectomy, knowing it meant she would no longer be able to have more children. However, she prioritized her health and the need to be there for her 3 children. She talks about her intense chemotherapy regimen, which was both physically and mentally challenging. One of her greatest fears was not being able to be the same mother to her children during this time, but with the support of family and friends, she was able to manage her treatments and maintain a sense of normalcy for her kids.
Rachael reflects on the strange and sudden symptoms she experienced before her diagnosis of sigmoid colon cancer, including the loss of taste, appetite, and intense stomach pain. She also recalls how her dog seemed to sense something was wrong, constantly staying close to her in the months leading up to her diagnosis.
Rachael expresses a determination to keep moving forward despite the numbness and emotional difficulty of the situation. After completing her chemotherapy, she now faces the uncertainty of whether her tumors will grow again. She is awaiting further scans and potential liver surgery as well as HIPEC treatments. While she feels anxious about the future, she remains resilient and has accepted that she cannot control everything. She now possesses a sense of peace and a more positive outlook on life.
Despite moments of frustration and asking, “Why me?”, Rachael has found strength in her acceptance of her condition. She is grateful for her family, friends, and support system, and continues to focus on spending quality time with her children, making the most of the present while preparing for any challenges that may lie ahead.
Name:
Rachael M.
Age at Diagnosis:
33
Diagnosis:
Colorectal cancer
Staging:
Stage 4
Initial Symptoms:
Loss of sense of taste and smell
Loss of appetite and vomiting
Stomach pain
Bloating
Headaches
Fatigue
Treatment:
Surgery (total hysterectomy, sigmoid colon removed, tumor removed in colon, stoma configuration, port placement)
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Jill F., a dedicated lung cancer advocate from Chicago, discusses her unique journey shaped by profound personal loss and her subsequent diagnosis. Her story begins in her youth, with the tragic loss of her grandparents, father, mother, and aunt to cancer, all within a relatively short time frame. This significant impact inspired Jill to advocate for lung cancer research and early detection even before her own diagnosis, including through assuming leadership roles at the LUNGevity Foundation.
Interviewed by: Stephanie Chuang Edited by: Chris Sanchez
In 2009, doctors diagnosed Jill with stage 1A lung cancer during routine surveillance she had pursued due to her family’s history. Her EGFR-positive status allowed her to benefit from targeted therapies, and she highlights the critical role of biomarker testing in personalized cancer care. Her cancer responded to the treatment, but returned some years later.
Jill emphasizes the stigma surrounding lung cancer, often tied to assumptions about smoking. She argues that such misconceptions detract from providing patients and families with proper support and compassion. Her advocacy aims to shift the narrative and ensure that every patient receives understanding, regardless of their history.
Jill underscores the importance of building trust and empathy between medical professionals and patients, advocating for clear and compassionate communication throughout the diagnostic and treatment journey. Her advocacy extends beyond her diagnosis. She continues to educate others, including on social media, about lung cancer screening and the advancements in treatment that save lives. Jill believes that empowering patients with knowledge about biomarker testing can help them make informed decisions and feel more in control during a challenging time.
Jill’s personal life remains a source of joy and motivation. She cherishes time spent with family and friends, outdoor activities, traveling, and volunteering. She explores new hobbies and finds solace in giving back to the community that supported her.
Jill’s message focuses on hope, resilience, and the power of advocacy. She encourages others to confront stigma, share their stories, and lean on one another for strength. Her journey, intertwined with loss and triumph, illustrates the importance of raising awareness, fostering empathy, and supporting ongoing research for better treatment outcomes. Jill concludes by reminding listeners that every story holds power and that no one should face their journey alone.
Name:
Jill F.
Age at Diagnosis:
39
Diagnosis:
Non-small cell lung cancer with EGFR exon 19 deletion
Staging:
Stage 1A
Initial Symptoms:
Nodule found during periodic scan
Treatment:
Surgery
Targeted therapy
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Jessica, from Abilene, TX, shares her journey after having been diagnosed with a rare form of pancreatic cancer — a solid pseudopapillary neoplasm.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Jessica’s symptoms began with persistent gastrointestinal discomfort, initially misdiagnosed as irritable bowel syndrome (IBS). In June 2024, severe abdominal pain led her to the ER, where imaging revealed inflammation in her pancreas. Follow-up tests discovered a 2.5 cm mass. A series of inconclusive biopsies led to a second procedure confirming a malignant, though typically non-cancerous, solid pseudopapillary neoplasm tumor, a diagnosis Jessica grappled with.
Jessica’s surgeon in Dallas recommended the Whipple procedure, involving removal of part of the pancreas, stomach, gallbladder, and small intestine. Surgery lasted 6 hours, followed by a week-long hospital stay marked by complications, from which she swiftly recovered due to her youth. Post-surgery, tests revealed clear lymph nodes, no metastasis, and a staging of 1B. Genetic testing ruled out hereditary links for her pancreatic cancer, attributing her condition to “bad luck.”
Jessica reflected on the mental toll of her experience, balancing her military career, family, and health challenges. She leaned on her husband and family for emotional support, embracing vulnerability and setting boundaries for her mental well-being. She also faced impostor syndrome, struggling with her comparatively “easier” journey.
Jessica’s post-surgery life includes regular bloodwork and scans to monitor nutrient absorption and detect recurrence. She highlights the importance of patient advocacy and early detection, emphasizing that her incidental diagnosis may have saved her life. She advocates for awareness of rare cancers and shares her story, including on her Instagram account, to inspire others to prioritize their health and validate their emotions during medical challenges.
Jessica’s message: cancer journeys differ, but all experiences are valid. She urges others to seek care for any symptom, however minor, and hopes that sharing her rare diagnosis raises awareness and empowers others to take control of their own health.
Name:
Jessica B.
Age at Diagnosis:
26
Diagnosis:
Pancreatic cancer (malignant solid pseudopapillary neoplasm (SPN) of the pancreas)
Staging:
Stage 1B
Initial Symptoms:
Upper abdominal pain
Nausea
Vomiting
Treatment:
Surgery (Pancreaticoduodenectomy ((Whipple procedure))
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
Kyle and Rachel share their journey with Kyle’s brain cancer. Kyle’s story began in 2004, years before he met Rachel. Diagnosed with a fist-sized brain tumor, Kyle faced grim odds, but underwent a successful experimental surgery, during which 99% of the tumor was removed. Despite having initially been given just months to live, Kyle survived, resumed his studies, and began a career in mental health.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
After 10 years of being in remission, Kyle experienced multiple recurrences of his brain cancer, each time undergoing surgeries and aggressive treatments including chemotherapy and radiation. Despite setbacks, including a critical period of aplastic anemia, Kyle’s optimism remains unshaken, believing he will live until 99.
In 2020, Kyle met Rachel on a blind date, and they married 2 years later. Their marriage and life together as a couple take place in parallel with developments in Kyle’s health. Rachel, a constant support, became Kyle’s advocate, pushing for second opinions and alternative treatments.
The couple has consulted several specialists, eventually finding a surgeon who, in 2024, successfully removed another tumor with clear margins. Kyle’s post-surgery recovery involves hyperbaric oxygen therapy and other therapies to help him regain his speech and strength.
Kyle and Rachel emphasize hope and advocacy. They stay proactive, exploring integrative approaches such as a plant-rich diet, qigong, and energy frequency healing. Despite the challenges of brain cancer, they maintain joy in their journey, prioritizing self-care and marriage. They plan to start couples therapy to balance caregiving with their relationship.
Kyle and Rachel advise others in similar situations to hope, advocate, and seek the right team of doctors. Their story highlights resilience, with Kyle’s belief in his recovery driving them forward.
Name:
Kyle O.
Age at Diagnosis:
26
Diagnosis:
Brain cancer (glioblastoma)
Grade:
Grade 4
Initial Symptoms:
Trouble speaking (stuttering) and thinking properly (struggled to remember what certain words meant)
Treatment:
Surgery (craniotomy)
Chemotherapy
Immunotherapy
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Brain Tumor Patient Stories
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Thank you for sharing your story, Kyle and Rachel!
Ken, 59, from Minnesota, shares his journey battling stage 4 colon cancer, which he was diagnosed with in October 2022. His life prior to diagnosis included an adventurous career as a meteorologist and storm chaser, followed by a long stint as a volunteer English teacher in the Himalayas. However, in 2020, the COVID-19 pandemic forced a change of plans, and he settled back in the U.S. with his family.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Initially, Ken ignored concerning symptoms like intermittent bowel changes and blood traces, attributing them to minor issues. His symptoms diversified and intensified in late 2022, with frequent fevers, weight loss, and fatigue. After visiting urgent care, he received a CT scan revealing thickening of the sigmoid colon and metastasis to his liver [making it a stage 4 colon cancer diagnosis]. His oncologist warned him that without treatment, his life expectancy was limited to under a year. Though chemotherapy was initiated promptly, Ken faced immediate complications, including endocarditis, which halted his treatment temporarily and required a PICC line and weeks of antibiotics. The chemotherapy’s side effects left him drained and underweight, sinking to his lowest point emotionally and physically by early 2023.
A critical moment came when Ken experienced an intestinal blockage. Doctors recommended palliative care and hospice, as his heart was too weak for surgery. However, Ken’s cousin, a liver specialist at MD Anderson, connected him to the Mayo Clinic, where surgeons conducted a life-saving colectomy and liver resection, removing 68% of his liver. This marked a turning point in his recovery, as he began to regain weight and strength.
In 2024, after successfully undergoing a heart valve replacement and prostate procedure, Ken faced new challenges as scans revealed minor cancer regrowth. His oncology team pursued aggressive treatments, including ablations for liver and lung spots, as well as new medications, all of which proved highly effective. Despite persistent health challenges and skin reactions, Ken’s latest scan in mid-July 2024 showed that his treatment was working remarkably well.
Throughout this ordeal, Ken’s faith and positive outlook and his strong support network of family and medical teams helped him navigate his complex diagnosis and treatment, underscoring his resilience and determination to overcome each new hurdle.
Name:
Ken S.
Age at Diagnosis:
59
Diagnosis:
Colon cancer
Staging:
Stage 4
Initial Symptoms:
Intermittent appearance of blood in stool
Occasional diarrhea
Increase in bowel movement frequency
Fevers and chills
Fatigue
Weight loss
Treatment:
Chemotherapy
Surgery
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Roshonda shares her story as an “ostomy warrior” after she was diagnosed with rectal cancer in 2022. Her initial symptoms included blood in her stool and a sensation of incomplete bowel movements in 2021. When she first visited a doctor, she attributed the symptoms to hemorrhoids. As her symptoms progressed, including seeing blood after sexual activity and worsening discomfort, she switched to Medicaid and a new healthcare provider, eventually leading to a colonoscopy in March 2022. The procedure revealed a mass and 3 polyps in her rectum, resulting in a rectal cancer diagnosis that devastated her, as memories of her late father’s battle with cancer resurfaced. She also had a spot on her lung which brought her diagnosis to stage 4.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Following her diagnosis, Roshonda met her team of specialists and began 6 weeks of daily radiation and oral chemotherapy. Despite the challenges, including burning pain, skin darkening, and intense discomfort, she persevered. Unfortunately, she lost her longtime job, and her unemployment benefits ended shortly after her diagnosis, complicating her financial situation. Thankfully, her mother and grandmother provided support, covering bills and easing some of the burden.
Despite the intense treatment, Roshonda’s tumor did not initially shrink enough. Her oncologist advised further treatment with intravenous chemotherapy, which involved 8 sessions over 4 months. These sessions were grueling, leaving her nauseated and exhausted. Reflecting on the mental toll, Roshonda stresses the importance of maintaining a positive outlook, which she believes helps many cancer patients manage their journey.
Facing surgery to remove her rectum and anus due to the tumor’s location, Roshonda had to decide between keeping the anal area, risking potential recurrence, or opting for a complete removal with a lifelong colostomy bag. She chose the latter, enduring significant pain after the procedure, with limited mobility and initial difficulty sitting.
Roshonda joined an online ostomy support group before surgery, learning from others’ experiences and finding comfort in a community of people facing similar challenges. This network has been invaluable, especially since she is the only one in her family with an ostomy bag.
Sharing her rectal cancer journey on TikTok and Facebook, Roshonda aims to raise awareness about colorectal cancer, particularly within the Black community, which faces higher incidence rates. She encourages early screenings and prompt medical attention for symptoms. Gospel music and faith have helped her find peace, especially a song that resonated deeply with her, helping her surrender her worries before surgery.
Adjusting to life with a colostomy bag, Roshonda emphasizes listening to her body and finding what works best for her. Though the journey has been painful and challenging, she remains grateful for her support network, faith, and the resilience she’s developed throughout her battle.
Name:
Roshonda C.
Age at Diagnosis:
37
Diagnosis:
Rectal cancer
Staging:
Stage 4
Initial Symptoms:
Blood in stool
Blood from rectum after intercourse
Sensation of incomplete bowel movements
Treatment:
Chemotherapy
Surgery
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Kate’s Stage 4 Hormone Positive Breast Cancer Story
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Kate, a 35-year-old mother of two from Brantford, Canada, was diagnosed with stage 4 hormone-positive breast cancer in late 2024.
Kate’s journey began in 2022, when she discovered a lump while breastfeeding her daughter. At the time, doctors dismissed it as a cyst, stating she was too young for a mammogram or biopsy. Over the years, doctors repeatedly disregarded her concerns, despite the lump growing significantly.
Balancing her roles as a mother, wife, and student pursuing a master’s in applied disabilities, Kate experienced severe anxiety, insomnia, and high blood pressure. She and her doctors had chalked these symptoms up to her hectic life, but later realized that they were signs of her advancing cancer. After she finally underwent a mammogram, ultrasound, and biopsy in July 2024, her hormone positive breast cancer was diagnosed as stage 3. However, additional scans confirmed that it was instead stage 4, after it had been found to have spread to her hip bone and some lung lymph nodes.
Kate quickly began an aggressive treatment plan, consisting of chemotherapy, a planned double mastectomy, and radiation. Despite the option to transition to palliative care, she chose to continue fighting for her family, especially her young children. Kate faces the physical and emotional toll of treatment, including exhaustion, chemo fog, and hair loss. Losing her hair was particularly difficult, but she found solace in the support of her husband and children, who embrace her unconditionally.
Her children, a 6-year-old son and a 2-year-old daughter, keep her motivated, though she struggles with guilt over their missed activities due to her treatment. Kate stays active in their lives, ensuring normalcy while relying on her strong support system, including family and friends who celebrated her birthday with a surprise party before her chemotherapy began.
Though she mourns the loss of aspects of her femininity, including the prospect of a hysterectomy due to her hormone positive breast cancer subtype, Kate prioritizes survival for her family. She and her husband chose not to freeze her eggs, feeling content with their 2 children.
Kate remains grateful for her oncologist, who has been thorough in diagnostics and treatment planning. She has not sought a second opinion, trusting his expertise. While the road ahead is uncertain and involves continued treatments, Kate draws strength from her determination to see her children grow and her close-knit circle of loved ones. Despite the challenges, her resolve to fight for more time with her family, to live her life to the fullest, and to help others advocate for themselves defines her journey.
Name:
Kate C.
Age at Diagnosis:
34
Diagnosis:
Breast cancer (hormone receptor positive)
Staging:
Stage 4
Initial Symptoms:
Rapidly growing tumor in right breast
High blood pressure
Insomnia
Anxiety
Treatment:
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Ashley’s Stage 4 ROS1+ Non-Small Cell Lung Cancer Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Ashley, a mother of 2 young children, shares her journey with stage 4 lung cancer. Initially experiencing a persistent cough post-COVID, Ashley also began to experience shortness of breath and sharp pains that led her to seek help at a hospital. While the first hospital misdiagnosed her ailment as pneumonia, a second hospital found a life-threatening pulmonary embolism. Further tests confirmed stage 4 adenocarcinoma (non-small cell lung cancer). Ashley and her husband, Jason, deeply felt the impact of her diagnosis, particularly given past family losses to cancer.
Determined to seek comprehensive care, Ashley pursued a second opinion from MD Anderson. There, she learned about her ROS1 biomarker, which allowed her to undergo targeted therapy. This approach has been successful, putting her in remission.
Ashley sought refuge in her faith and combines traditional treatment with holistic methods, emphasizing the importance of integrating both to support her immune system. She has taken proactive steps to improve her well-being, including leaving her full-time job to focus on her health and spend more time with her family.
Ashley underscores the significance of self-advocacy in her treatment, highlighting instances where she challenged medical advice and conducted her own research. Through therapy and a positive mindset, she combats the mental health challenges associated with her illness. Ashley advises others to maintain hope, advocate for themselves, and support their emotional and physical health integratively. Her story emphasizes the importance of seeking answers and living fully despite her prognosis, as she cherishes her time with loved ones and continues making memories.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.
I’m such a data-driven, logical, realistic person.
But cancer has taught me that I have to live in the space where optimism and hope are.
Introduction
Hi, I’m Ashley. I was diagnosed at 35 years old with stage 4 lung cancer, adenocarcinoma, non-small cell with the genetic mutation of ROS1.
I am a mom of 2, a little boy and girl who were 5 and 2 respectively when I fell ill. I love being outside, going on nature trails and hiking.
Also, we have a pool in our backyard and swimming laps for exercise is definitely a hobby and something I was doing a lot leading up to my diagnosis.
I was also working out with a personal trainer and lifting weights, all up until the day my initial symptoms started.
Pre-diagnosis
Initial symptoms
Before all this began, I struggled with a persistent cough that lasted for maybe 8 or 9 months.
I’d had COVID in January, and by September I was still coughing. On a daily basis, it would start out mild, but would worsen as the day progressed, and then I would be hacking by bedtime. But I wouldn’t allow it to interrupt my day; I would still be going 100mph as a mom.
I saw a doctor in May, and he chalked it up to allergies. I just kept getting my daily stuff done because it wasn’t so disruptive anyway.
Later on in the year, my husband Jason and I were working out with a personal trainer, and I was weightlifting, deadlifting heavy weights. We started HIIT workouts, high intensity interval training.
One morning, we were swimming laps in our backyard pool to the point that we were trying to huff and puff. And I noticed that I really couldn’t be underwater for a very long time.
I went on about my day and began work by 2:00 p.m. that day. I started having a sharp pain in my right abdominal area, the rib cage area. I powered through and ignored it.
That evening we were hosting a small group, so we had roughly like 20 or so people over, and were in the middle of a meal when I started having another bout of sharp pain in my right abdomen again and my right shoulder area too.
I thought, man, was it something I ate? Could it be gallstones? It’s unbearable, just a lot of pain. But I decided I would get to it after everybody left. The group laid hands on me and prayed over me, and we went about our night after they went home.
The next day, the pain got even more intense. I couldn’t walk from my bed to the bathroom without hunching over in agony. So we decided it was time to head to the ER.
We went in, and they did a workup. And they found that I had a lung full of fluid. They told me I had pneumonia and sent me home with literally 12 prescriptions, like muscle relaxer, pain relievers and inhaler and everything you could think of for pneumonia.
That weekend, I spent in my room away from my kids because I didn’t want them to catch anything from me. And that evening, my lips started to turn blue. And at this point I was having trouble breathing, but at no point did I think that it had anything to do with my lungs — I just thought that the pain was so intense that it was affecting my breathing.
First hospital admission
Jason rushed me to a hospital where I got admitted this time. They took my blood oxygen level using a pulse oximeter and the reading was 70 or so, which was unbelievably low.
I had them retest me 3 times, with the same result each time. They rushed to provide me with supplemental oxygen, and I ended up staying at that hospital for 4 days.
At that hospital they conducted a workup and scans, including a CT scan with contrast. And that’s when the 6-letter word entered the conversation.
They said they had seen lesions on my spine, and said that they could be either calcium deposits or cancer. And since I wasn’t anywhere near 60 years old, calcium deposits were unlikely.
They did 2 biopsies — the first one was around the sternum and completely missed the area. I could feel it, feel the drill, feel everything. They were nervous about proceeding because they could hit my heart if I moved.
So the next day they drained the fluid from my right lung and conducted a second biopsy, for which they completely put me under. It was in a whole different location this time. And then they started working on getting my oxygen back.
So it was a bit of a jarring hospitalization for me. I was thankful to have been supported by my family and my church during my stay.
After 4 days, I was ready to be discharged me and to be sent home with oxygen. But they spoke with me and said that since cancer has entered the conversation, they recommended that I transfer to a second hospital, in Dallas.
You have to lead your treatment process in your journey.
You can feel like you’re just a number, given the number of patients doctors have to see.
But of course you’re more than just a number.
Second hospital admission
The second hospital was 45 minutes away by car, and my husband took me there right after I was discharged. We got in pretty quickly and told them what the first hospital had said — that we needed to have a PET scan double-time.
Lo and behold, this second hospital discovered that I had a really large pulmonary embolism, caused by a huge blood clot in my lung, which the first hospital had missed completely.
So only by the grace of God did I manage to survive. I’ll never forget the expression on the faces of the doctors.
They immediately put me on a blood thinner, and I had some great specialized care courtesy of amazing nurses and specialists like physical therapists. But cancer continued to be the main topic of conversation at this hospital.
I had to undergo scans that required me to be wrapped up like a mummy. I was terrified and claustrophobic, but I just had to go in that machine. I just had to talk to the Lord and try to be courageous, and also focused on scripture and thought about my kids.
I ended up spending 8 days in that Dallas hospital.
Non-Small Cell Lung Cancer Diagnosis
While I was in Dallas, the results had come back from the tests the first hospital had run.
They were positive for adenocarcinoma.
Reaction to the diagnosis
Initially, during those 12 really long, jarring, shocking days before my diagnosis, we just kept holding on to the hope that I didn’t have cancer. We kept praying and hoping that they really were just calcium deposits or just something else, something benign. But all the signs were always pointing towards cancer.
And so the moment that the doctor came in and confirmed it was cancer, I completely lost it. I bawled my eyes out and shook uncontrollably. It felt so, so unbelievable. And what’s worse, it wasn’t just cancer, it was lung cancer.
Because the doctor had told me that since I was a nonsmoker, if I did have cancer, it would probably be breast cancer. So I was so taken aback that it was cancer. It was lung cancer. It was stage 4 non-small cell lung cancer. It was inoperable. It was terminal. And he told me that some people in my situation would live, say, 5 to 10 years.
So a tremendous amount of fear rushed over me, and I was shaken. But I clung to my faith and knew that the ultimate physician is the one who has the final say.
As for my husband, he’s a bit of an introvert, and processes things very differently from me. I think he did a lot of his grieving outside the room. He wanted to remain strong and steady and full of faith and constant. He’s already lost his dad and brother — the latter to cancer, just in 2020, and in the low 40s, so I think there’s some PTSD there. And I think he kind of shut down.
So quite apart from me, he sat in his chair and didn’t express too much emotion. And that’s been in character with how he’s been grieving, like when the kids are asleep, we’ll lie down and sometimes cry together.
You may have big decisions to make really fast, and to do that — and to advocate for yourself — you need to be prepared.
Second opinion
I decided to get a second opinion with MD Anderson, based on their reputation.
While I still do have an open file at the Dallas hospital and can get treatment from them if I need to, the quarterback of my care team, the decision maker, would be MD Anderson.
MD Anderson had a lot to teach me. For instance, I had already heard that a particular drug I was about to take, if I were to respond well to that treatment, would work for a couple of years.
But then I learned from talking to MD Anderson that the cancer was likely to come back, that I might grow resistant to the drug in a couple of years. I didn’t know that coming into that appointment.
ROS1 and biomarker testing
I also have the ROS1 biomarker.
The topic of me possibly having a biomarker was brought up at my first appointment. Ever since then, I was really hoping that I had a genetic mutation, because I don’t want to do traditional chemotherapy at all.
So I was very happy to learn that I do have the ROS1 biomarker. And my having it has informed my treatment.
So I’ve been undergoing a targeted therapy. I’m taking a TKI drug and it’s been working really well.
Treatment, remission, and further steps
Targeted therapy for non-small cell lung cancer
I’m now in remission thanks to my first-line treatment.
Every single night, I take my TKI drug. I’ll be on it for the rest of my life.
I can’t actually handle a full dose — I didn’t even start out on the full dose, I began with three-fourths of a dose — and now I’m just taking half a dose every time.
My medicine is heavy on my kidneys and my liver, which makes it imperative that I get them to be in tiptop health.
Holistic approach
My total approach, though, is actually more integrative and holistic. I augment the solution MD Anderson has given me with solutions from integrative doctors.
I had actually quit my job so I could spend more time with my family, my kids. But another big reason I did that was also to free myself up to do things that are going to help my immune system. A lot of holistic care and integrative treatment.
I don’t think it’s all Western or all traditional medicine that helps. I believe it’s a blend of both, like you take the best of both worlds. And so I do seek out the opinions and inputs of both oncologists and experts in integrative medicine.
When your mortality is on the table and you see so many people across the board struggling with and passing away from cancers like this [ non-small cell lung cancer ], it’s like you want to throw a hundred things at the disease and not just 1. If I were to depend on MD Anderson alone, that would just be like placing all my eggs in only 1 basket. And so I would rather have multiple experts weighing in.
I think the integrative world does great at looking into root causes. They say that cancer isn’t just this tumor that appears 1 day and out of nowhere; it’s something that has been building in one’s body for maybe a decade, for example. And it’s like a perfect storm, like glucose in the body, the diet, the microbiome, the immune system, and so on.
And so I do things like taking IVs of sodium bicarbonate — which is alkaline and helps make my body alkaline too, so that cancer cannot survive in it. I think my whole mentality as far as integrative medicine goes is that I create an environment within me that cancer is unable to return to.
I went to an integrative cancer center in California for 6 weeks through Thanksgiving and Christmas last year. I entered with my oxygen tank in tow. I left without it.
Self-advocacy
Sometimes, these approaches I go for and experts I consult clash and don’t agree with each other, or with me. And, moreover, sometimes they miss things. And this is where I have to be my own advocate and discern and ask God which direction I should go.
I’ve already mentioned earlier that the first hospital I went to completely missed my pulmonary embolism, and that’s no less than life-threatening. I also have a run-in with a particular doctor to share.
So I did a blood panel and checked out my B12 levels, which were way off the charts at over 2,000. The doctor just shrugged it off, saying that it was water-soluble and thus not worth looking into. He said, it’s probably from your diet. So I paused drinking this plant-based protein shake I’d been taking, and it had no effect on the super high B12 levels.
So I self-advocate. For every doctor’s appointment I go to, I craft bullet points and an agenda to help guide our discussion. And sometimes I’ll send this agenda ahead of time and tell the doctor, hi, I’d like us to address these concerns and I want you to know ahead of time what we’ll be discussing.
You have to lead your treatment process in your journey. You can feel like you’re just a number, given the number of patients doctors have to see. But of course you’re more than just a number.
Do your research, learn from other people. At the start I was like, it’s a full time job to learn everything. But that’s how I know what kind of questions to ask. You may have big decisions to make really fast, and to do that — and to advocate for yourself — you need to be prepared.
So I’m living life.
I’m doing all the things and making all the memories.
Improving mental health
I’ve also found that there are steps one can and should take to improve one’s mental health.
After my non-small cell lung cancer diagnosis, I literally was walking in depression. I was literally preparing to die. For the first year or so, I experienced so many days and nights where I thought about dying a lot. I would just see my husband and our 2 kids continuing life. My mind would even go to events like my daughter’s future wedding taking place without me, or my funeral with my family grieving.
But I couldn’t succumb to that.
Some people in cancer groups online, for example, are preparing to die and doing things like writing their kids books so that they’ll read them in the future and get to know or remember their parents.
Sure, I’d want to write a book of my own down the line. But I’d like to do it from the standpoint of being NED.
And so I think that a lot of therapy has been necessary.
Living life
So I’m living life. I’m doing all the things and making all the memories.
I’m literally not saying no to anything, just trying to do all the fun things I can with my husband and kids.
We’re having a whole lot of fun.
Advice for others
Place your trust and have hope
The first piece of advice I would like to offer is definitely to have hope. And for me, this is based in faith.
My faith is everything to me. My experience has taught me that placing my trust in God and something bigger than myself is crucial.
I’m such a data-driven, logical, realistic person. But cancer has taught me that I have to live in the space where optimism and hope are.
Think positively and act like you’re healed
Positive thinking is massive. It may seem silly to some, but from all the research I’ve done, I’ve found that there’s so much truth to it.
It’s like our brain is telling our body what to do.
So act like a healed person. Keep living your life like you’re healed.
Advocate for yourself
I’ve said this already earlier — it’s so important to advocate for yourself, and to do so you must prepare properly.
Don’t just trust one doctor. Go get a second opinion, seek the help and inputs of other experts. Get as many eyes on the glass as you can. Especially if you have other people like kids who love you and depend on you.
And if their opinions and advice clash, seek guidance to resolve it. But build your own knowledge base too.
Support yourself both physically and emotionally
I think it’s also crucial to support yourself integratively, holistically, as you’re going through this. And emotional work is extremely important.
I’ve learned in the integrative space that emotional work matters just as much as physical work does. And not only dealing with the emotions you’re managing at present, but also with any emotional backstory, like childhood traumas, that might have contributed to your situation at present.
I’ve heard from more than one integrative provider that deals with cancer patients and has been doing so for decades. The ones who don’t survive are the ones who aren’t doing the emotional work.
Get to the root cause
If you experience a suspicious symptom just like I did with my cough, don’t shrug it off. Investigate it and get to the root cause.
I didn’t have allergies year-round — so why was I having a cough for 9 months?
I didn’t want to take time away from my work and family to do so, and besides, I thought, my cough was livable. It wasn’t really interrupting my daily life. But look at how things developed.
My cough was in itself a small thing, but it was persistent. It wasn’t allergies. It wasn’t long COVID. It wasn’t pneumonia. It was a sign that I had stage 4 non-small cell lung cancer.
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