Tag: real women real stories

My Cancer Turned Out to Be a Rare Disease


As told to Jacquelyne Froeber

“I’ve never seen anything as invasive as this in my life,” my surgeon said.

I was still groggy from the anesthesia, but the look on his face meant what I heard was true. Apparently, I was in surgery for six hours — not two — and whatever was growing in my ear was also in the layers of tissue protecting my brain.

“It looks like cancer,” he said.

Shock doesn’t even begin to describe what I felt at that moment. I went in for an ear infection. Now I have brain cancer?

It all started innocently enough. In January 2011, my right ear was full of pressure and everything sounded muffled, like I was underwater. But I didn’t think it was too serious. January was actually a really happy and exciting time. It was the month my first granddaughter was born, and I couldn’t think of a better way to start the new year.

I was diagnosed with a mild ear infection, so I took antibiotics but they didn’t help. Nothing did. I was eventually referred to an ear, nose and throat (ENT) specialist, but it took months to get an appointment. When I finally got in to see the specialist, I had a scan of my ear. The imaging showed that there was a mass, so they did a biopsy right away.

It was after the biopsy surgery that I learned that the mass was also in my brain and probably cancerous. But the pathology report came back negative. “How is that possible?” I asked. My provider was stumped. He said the tumors acted like cancer, so we were going to treat it like cancer — very aggressively.

I had surgery to remove the tumors — and that surgery was a success — but six weeks later, the mass was back. And two weeks after that, another mass was growing in the left side of my head. It took five surgeries to remove that one.

We still didn’t have confirmation that the tumors were cancer, but I started radiation to try to stop them from growing. I’m a radiologic technologist by trade, so I understood the effects of radiation treatments — but I didn’t know how terrible the side effects were going to be for me. The treatments left me weak and drained of all my energy. I was also having debilitating headache attacks that felt like a sledgehammer to the skull.

On top of everything, the radiation wasn’t working. And at that point, the mass had damaged the hearing structures in my right ear, and I needed surgery for a cochlear implant.

Sabrina ear implant(Photo/Courtesy of Sabrina Riddle)

By November 2013, I was worn down. Exhausted. Depressed and unable to hear out of my right ear. With my granddaughter’s second birthday approaching, I could only think one thing: I’ve been in this fight for two years and here comes another year I’m going to have to deal with whatever this undiagnosed thing is.

I’d seen many specialists in effort to get a diagnosis and treatment plan. But one particular rheumatologist was curious enough to order a spinal tap. When the results of the spinal tap came in, she said, “I think I know what you have, but I can’t diagnose you. I need you to go to Massachusetts to see the leading researcher for this disease.”

She didn’t have to tell me twice. I packed my bags and met with the specialist the next week. His name was Dr. Stone, and he told me I had immunoglobulin G4-related disease (IgG4-RD) — an extremely rare inflammatory disease. He explained to me that IgG4-RD causes tumors to form in different parts of your body and it looks and behaves just like cancer because it’s so aggressive — but it’s not cancer.

I sobbed with relief right there in his office — I finally had a diagnosis. But I was also crying for the past three years of my life. All of the surgeries, multiple hospitalizations, the boatload of steroids — and they have their own set of issues — none of it helped. I don’t fault the doctors for any of it, but I’d been through a lot. And if that was the treatment for cancer — what would treatment for a rare disease like this one be like?

Dr. Stone is known as the godfather of IgG4-RD, and he reassured me that my new treatment plan was going to work and it wasn’t as harsh as radiation. I started a biologic infusion and right away I began to see signs that the disease was going into remission. It felt like a weight was being lifted off of my life. For the first time in a long time, I felt hope for the future.

I started feeling better — I had way more energy, fewer headache attacks and visual disturbances, and improved joint pain. I even got a little cocky, thinking I was a one-and-done and I could put the disease behind me.

But that wasn’t the case. In 2015, I had a relapse. It started with blurred vision and severe headache attacks — and this time the cognitive decline was swift and shocking. I was devastated. I had the treatment infusion, and within about two months, I started to feel more like myself again. But when I relapsed again in 2017, I realized that this was probably going to be a pattern for the rest of my life.

Each time takes a toll. The effects of IgG4-RD disease on the layers of my brain (called meninges) can cut off oxygen to the brain and arteries and cause seizures, so I am really concerned with each flare because I don’t know what might happen each time it comes back.

Last November, I was on the phone with my sister and I just lost it. I felt like the disease was looming over my life, even when I was in remission. The loneliness that comes with having a rare disease adds another layer of sadness and despair. I didn’t have a single person to talk to who really knew about what was happening to me or understood that I looked OK on the outside, but I was the furthest thing from OK. I told her I wished there were more advocacy around the disease.

About a week later, I got my wish. An advocacy group called me and asked if I’d be interested in speaking at a conference about IgG4-RD. I was so shocked I nearly dropped the phone. By December, I was on a plane to the conference, and since then I’ve been working as a patient advocate for IgG4-RD.

Through my new platform, I connect with other patients with IgG4-RD, as well as caregivers and healthcare providers trying to advance treatment for the disease. Having a community has been a life changer for me. Having a rare disease is exhausting — especially one that affects your brain. But I now know that I don’t walk this road alone.

Right now, I’m going through a relapse and it’s hard. The pain is sometimes unmanageable and the heavy doses of pain medication weigh me down. But in the past year I’ve seen so much advocacy and research that makes me hopeful for the future. And sometimes all you can do is keep hope alive while you wait.

This educational resource was created with support from Amgen, a HealthyWomen Corporate Advisory Council member.

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Having a Rare Disease Called PBC Taught Me to Speak Up


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As told to Erica Rimlinger

At my annual physical in spring 2002, my blood work was not quite right. “Your liver function isn’t great,” the doctor said. “We’ll give it another year, and if it’s still off, we’ll do something about it.” I didn’t think much about it. I didn’t have symptoms worth noting. I was tired, of course, but aren’t most people?

The next year, when my blood work again came back looking suspicious, my doctor called and left me a message at work, saying he wanted to test me for hepatitis. I was surprised and more than a little confused: I had no risk factors. I was certain my doctor was wrong.

A few months later, I changed jobs. I had to wait for my new health insurance to begin, and I didn’t have enough sick time to take time off from work to go to the doctor anyway.

But health problems don’t always care about your insurance or sick leave availability. One day at my new job, I had a gastric attack that kept me in the bathroom for 45 minutes. There was so much blood I thought I must have been bleeding internally.

Once I composed myself enough to return to my desk and call my doctor, I had to ask my new, all male coworkers: “Can somebody drive me to the hospital?” Panic ensued. After debating who had the keys, what hospital I was going to, and who was going to call my parents, one coworker screeched his car up to the front of the building and drove me, quickly and sometimes in the wrong direction, to the hospital. I tried to stay calm amid the chaos, but inside, I was panicking.

At the hospital, the tests revealed no clues to the source of the attack. I was instructed to make an appointment with a gastroenterologist, a GI doctor. I saw him the week before Christmas, and he told me he thought I had primary biliary cholangitis, or PBC. As part of the diagnosis, the doctor ordered a liver biopsy to confirm this and said that in his 30 years practicing medicine, he’d only seen one other person with this condition.

What was PBC? My mom and I sat crying in the car outside the doctor’s office, searching the internet on our phones. I read that I could require a liver transplant and that PBC could shorten my lifespan. I didn’t know if I was going to live or for how long. We didn’t tell anybody, except for my husband, until after the holidays. I didn’t want to ruin Christmas.

The biopsy confirmed I had PBC, and I started taking a medicine that would be the only PBC treatment available to me for many years to come.

Some people have symptoms that lead to their PBC diagnosis, but I didn’t. After I was diagnosed, however, I started experiencing severe diarrhea, making my normal daily activities impossible. One memorable occurrence found me crouched under an umbrella in the pouring rain on the side of a highway. With the help of my husband and family, I coped, eventually developing systems and tools to get me through. Hoping to improve my health, I had gastric bypass surgery in 2007, believing — unrealistically — that weight loss would help with all my liver problems. It didn’t.

Abby and PBC group2022

I stopped investing my energy in wishful thinking and realized I needed to live with my illnesses, not just survive. I started with my upcoming high school reunion. In high school I’d been a wallflower: I didn’t participate in activities and kept to myself. But today I realized that person needed to change. I volunteered to help plan the reunion, and the reunion committee gave out a new award that year: the butterfly award. I won it because I had finally come out of my chrysalis. I knew I was on the right path.

I started advocacy work, which I continue to do today. Every February, I head up to Capitol Hill to advocate for rare diseases. My goal is to knock on every door every year until there are no more rare diseases to cure.

After a while, the PBC medication I’d been taking for many years stopped working as well as it had been, and my blood work started to show that my liver function was getting worse. My gastroenterologist was retiring, but through networking with other people living with PBC, I found a doctor who put me on a new medication that turned out to be a good fit for me.

Then the FDA took some steps that impacted my ability to get the medicine. My newfound advocacy and lobbying skills came to the rescue when I later testified before the FDA on behalf of the medication. After the hearing, the FDA put steps in place that would keep the medicine available. I’d been heard.

My experience with a rare chronic illness has taught me to find something good out of every bad thing. Today, I have hope for new developments that will be coming with improved understanding of the disease. I wish more people with PBC knew they have treatment options. There’s no cure — that’s true — but you can make plans.

You can live a life and be a whole person, not a statistic. I have PBC, but I’m not PBC, and I’m not defeated by it. Dealing with a rare chronic illness has helped me discover a belief in myself I never knew I had.

This educational resource was created with support from Gilead.

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Tener una enfermedad infrecuente llamada CBP me enseñó a decir lo que siento


English

Tal como se relató a Erica Rimlinger

En mi examinación física anual en la primavera de 2002, mis pruebas de sangre no revelaron resultados completamente normales. “Su función hepática no es grandiosa”, dijo el doctor. “Démosle un año, y si todavía no hay resultados normales, haremos algo al respecto”. No pensé mucho en eso. No tenía síntomas que valiesen la pena tomarse en cuenta. Me sentía cansada, desde luego, pero ¿no es ese el caso de la mayoría de personas?

El año siguiente, cuando los resultados de mis pruebas de sangre fueron sospechosos otra vez, mi doctor me llamó y dejó un recado en mi trabajo, diciendo que quería que me someta a pruebas para ver si tenía hepatitis. Estaba sorprendida y muy confundida: No tenía factores de riesgo. Estaba segura de que mi doctor había cometido un error.

Unos meses después, empecé a trabajar en otra compañía. Debía esperar a tener cobertura de mi nuevo seguro médico y no había trabajado suficiente tiempo como para pedir permiso para ir al doctor de todas formas.

Pero los problemas de salud no siempre ocurren en momentos convenientes en lo que se refiere a la cobertura del seguro o a permisos. Un día en mi nuevo trabajo, tuve un episodio gástrico que me mantuvo en el baño durante 45 minutos. Había tanta sangre que pensé que debía estar sangrando internamente.

Una vez que recupere suficientemente la compostura como para regresar a mi escritorio y llamar a mi doctor, tuve que preguntar a todos mis nuevos colegas hombres: “¿Puede llevarme alguien al hospital?” Hubo pánico. Después de debatir quién tenía las llaves, a qué hospital iba a ir y quién iba a llamar a mis padres, uno de mis colegas condujo deprisa su carro al frente del edificio y me llevó, rápidamente y a veces en la dirección incorrecta, al hospital. Trate de mantener la calma en medio de todo el caos, pero por dentro, estaba muerta del miedo.

En el hospital, las pruebas no revelaron ninguna clave de la causa del episodio. Me dijeron que programe una consulta con un gastroenterólogo, es decir, un doctor GI. Tuve la consulta la semana antes de la Navidad y me dijo que pensaba que tenía colangitis biliar primaria o CBP. Como parte del diagnóstico, el doctor solicitó una biopsia hepática para confirmarlo y dijo que en sus 30 años de practicar medicina, solo había visto a otra persona con este trastorno.

¿Qué era la CBP? Mi mamá y yo empezamos a llorar en el carro afuera del consultorio del doctor, haciendo búsquedas en el internet con nuestros teléfonos. Leí que podría necesitar un trasplante de hígado y que la CBP recortaría mi esperanza de vida. No sabía si iba a vivir ni por cuánto tiempo. No lo revelamos a nadie, excepto por mi esposo, hasta después de las festividades. No quería arruinar la Navidad.

La biopsia confirmó que tenía CBP y empecé a tomar un medicamento que sería el único tratamiento disponible para CBP para mí por muchos años.

Algunas personas tienen síntomas que dan paso a su diagnóstico de CBP, pero para mí no fue así. Después de que me diagnosticaron, sin embargo, empecé a experimentar diarrea grave, imposibilitando mis actividades cotidianas normales. Un incidente memorable hizo que me mantenga agachada en cuclillas bajo un paraguas bajo la lluvia a un lado de una autopista. Con la ayuda de mi esposo y familiares, lo manejé, ingeniando eventualmente sistemas y herramientas para lidiar con esta situación difícil. Con la esperanza de mejorar mi salud, me sometí a una revascularización quirúrgica en 2007, pensando, en una forma poco realista, que la pérdida de peso sería útil para solucionar todos mis problemas hepáticos. No fue así.

Abby and PBC group2022

Dejé de enfocar mi energía en fantasías improbables y comprendí que debía vivir con mi enfermedad, no solo sobrevivir. Empecé con la reunión de antiguos alumnos de mi colegio que estaba por celebrarse. En la secundaria fui muy tímida: No participé en actividades y era muy reservada. Pero ahora comprendí que debía cambiar. Ofrecí ayuda para planificar la reunión y el comité de la reunión otorgó un premio nuevo ese año: el premio mariposa. Lo gané por mi transformación. Sabía que estaba yendo en la dirección correcta.

Empecé con mi trabajo de activismo, el cual sigo haciendo hoy. Todos los meses de febrero de cada año, me dirijo al capitolio para abogar por curas de enfermedades infrecuentes. Mi meta es hacer lo más posible cada año hasta que no hayan enfermedades infrecuentes sin cura.

Después de algún tiempo, el medicamento para la CBP que estaba tomando por muchos años dejó de funcionar tan bien como lo solía hacer y los resultados de las pruebas de sangre mostraban que mi función hepática estaba empeorando. Mi gastroenterólogo se estaba retirando, pero hablando con otras personas que viven con CBP, encontré un doctor que me recetó un medicamento nuevo que resultó ser bueno para mí.

Entonces la FDA [Administración de medicamentos y alimentos] tomó algunas medidas que afectaban mi capacidad para obtener el medicamento. Aproveché las destrezas que descubrí recientemente que tenía de abogacía y activismo cuando testifique ante la FDA a favor del medicamento. Después de la audiencia, la FDA implementó pasos para qué el medicamento se mantenga disponible. Me escucharon.

Mi experiencia con una enfermedad crónica infrecuente me enseñó a encontrar lo bueno en cualquier situación difícil. Ahora, tengo la esperanza de que hayan nuevos descubrimientos con los que se pueda comprender de mejor forma esta enfermedad. Desearía que más personas con CBP supieran que tienen opciones terapéuticas. No hay una cura, es verdad, pero puedes hacer planes.

Puedes disfrutar tu vida y ser una persona integral, no solo una estadística. Tengo CBP, pero esa enfermedad no me define y no dejo que esta situación me derrote. Lidiar con una enfermedad crónica infrecuente ha sido útil para descubrir una seguridad y una confianza en mí misma que antes no sabía que tenía.

Este recurso educativo se preparó con el apoyo de Gilead.

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I Needed Help to Recover from My Eating Disorder



As told to Marnie Goodfriend.

February 24 – March 3, 2025, is National Eating Disorders Awareness Week.

I remember the first time it happened — my first bulimic episode. I was in Cape Town for the summer, working for a legal organization after finishing my first year of law school. I didn’t think much of it. The binging and purging only happened occasionally, so it was easy to lock this dysfunction away in a box, similar to the way I handled growing up in an unpredictable home that was joyful but also full of fighting, screaming and sadness.

After leaving home at 22, my life became more peaceful, but I always expected a monster to appear around the corner. A year later, I didn’t know how to function without the chaos I was used to, so my mind recreated it in another way. I hadn’t yet realized the profound impact that my family dysfunction had had on me. And, being in law school, I also found myself in an atmosphere where people constantly judged themselves and others. I was an overachiever who pushed down my emotions, so there were years of pent-up trauma inside me. Binging and purging was somehow self-soothing and a release from all these stressors.

I also began obsessing over how I looked and was constantly critiquing my body. I thought the world would end if I ate a tiny bag of chocolate almonds. How could I possibly allow myself to do that? I’ve screwed up beyond all recognition. That was my thought pattern. The voice inside my head was so negative and judgemental. I never liked what I saw in the mirror. Even when I wasn’t binging and purging, I had ever-present thoughts of restricting and a hyperfixation on my body.

My eating disorder was a shameful thing I kept hidden from the world. From the outside, my life looked very put together, which made it harder to admit what was really going on. As an accomplished, smart and successful woman, I thought, “I’ve got this. I can solve this problem on my own.”

That’s the challenge of having an invisible disorder — nobody knows. I continued to beat myself up and wondered why bulimia had such a chokehold over me. And, after each episode, I experienced bouts of depression.

When I searched online for a way to “solve” bulimia, everything pointed to getting help. But for years, I couldn’t bring myself to do it. I was embarrassed and ashamed.

It was easy to convince myself I could deal with this problem on my own because I went for long stretches of time without binging and purging. Then, the pandemic hit and the world got quiet. My episodes started happening more frequently, and I had more time to step back and think about my life. That’s when I finally connected with my first therapist. They asked me to write a list of things I said to myself when I looked in the mirror. It was a painful experience I’ll never forget.

By this time, my friends and family knew about my disorder, but I downplayed it and told them it was under control. My parents even had an intervention, but I told them I was getting the help I needed, so they left it alone. After just six sessions with my first therapist, my symptoms stopped. I quickly thought I was healed and my eating disorder was behind me. I now know we had only scratched the surface of the work that needed to be done. I went on to see several other therapists for short periods of time.

Then, I got into a new relationship that furthered my false belief that I was “healed.” My symptoms occurred only when he was away. We were two broken people latching on to each other, so I felt like I had support, but it was a Band-Aid over all this other pain I had not yet worked through. I now know this person was never healthy, but I found short-term relief in being with him.

Our painful breakup was a major turning point for me. I found a therapist who also had an eating disorder and experience with bulimia. I felt seen and not judged by her. She would come to my house and sit on my couch, creating the layer of safety I needed to open up. I learned how to disengage from negative thought patterns around food. Unlike sobriety from alcohol or substances, you still have to engage with food, which requires constant awareness and catching your problematic thoughts before they take over. The therapist’s nutrition-focused approach reinvigorated my love of cooking. I got creative in the kitchen and enjoyed preparing meals for myself and others again. She also connected me with a breathwork practitioner, and those sessions enabled me to shift my mindset and let go of past traumas.

I feel immensely grateful for where I am today, as there were many times when I never thought I would get to a place where I have a healthy relationship with food. As part of my healing journey, I started working with the National Eating Disorders Association to help others experiencing what I did. As a board member, I support their mission to change the way eating disorders are recognized, understood and treated so those who are affected can achieve recovery and lasting well-being.

I believe there is a reason for everything. For me, my eating disorder led me to deep soul work, greater self-understanding, compassion, a thriving relationship with myself and my family, and the opportunity to make a difference in the world. There is always a path forward, beginning with letting others in who see you and support you.

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Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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I Had a Heart Attack at Age 39


As told to Jacquelyne Froeber

February is American Heart Month.

It was Friday night in Waikiki and I was late. I rushed backstage and apologized to the crew. “I went to the M.A.C. counter to get my makeup done and it took longer than planned,” I said.

That wasn’t exactly true. I didn’t plan to go to M.A.C. — I’d forgotten my makeup at home. And it wasn’t the first time. Embarrassed, I avoided eye contact with the other singers.

The truth was I didn’t know what was going on with me. I was tired all the time — drained — even walking up a flight of stairs took my breath away. And the forgetfulness wasn’t like me. I chalked it up to working a full-time job and singing a few nights a week, but I knew something was off.

Just before I went on stage, I bent down to put water in my cup and felt pain in my back. I gasped and stood up quickly. I’d felt that pain before.

About a year earlier, I was visiting friends in Las Vegas when I started having heartburn and back pain and nausea that didn’t go away. I knew something wasn’t right so I called 911. At the hospital, I was diagnosed with myocarditis — inflammation of the heart muscle. But they couldn’t tell me why it was happening. I hadn’t been sick and there was no known infection. I tried to ask questions — why was I in such severe pain? — but they basically blew me off, gave me morphine that literally made me sick and said the symptoms would go away on their own. I had a follow-up appointment back at home, and the doctor said the same thing. I had myocarditis and I’d be fine, but I shouldn’t push myself or exercise for about a month.

Tricia Marciel2019

Now, that same feeling was back but a thousand times more intense. I did what many women do when experiencing heart problems — I tried to work through it. I bartered with myself: If I could get through the set, I’d drive myself straight to urgent care.

But I couldn’t do it. By then, I could barely stand up. One of the singers called 911, and responders took me out on a stretcher through the packed venue of visitors and locals waiting to see the show.

At the hospital, the doctor came into the room and went over my symptoms with me. He said I was having a heart attack and they wanted to do surgery.

I chuckled. “That’s not happening,” I said.

I was only 39. I exercised most days of the week. I knew I could probably eat better, but it wasn’t like I was having a burger and fries every day. Also, it wasn’t even possible for someone my age to have a heart attack … was it?

I called my family. They agreed that it seemed odd that someone so young could have a heart attack but that I should have the procedure because something was wrong. I couldn’t disagree.

When I woke up from surgery, the doctor confirmed that I did have a heart attack and they had to do an angioplasty. He showed me on the X-ray where the balloon had been implanted in my heart. He also said that I was anemic — apparently low iron levels can be a contributing factor to a heart attack — and I needed to take cholesterol and blood pressure-lowering medication.

I nodded along as he handed me prescriptions and I was cleared to go home. After he left, I sat there stunned and tried to wrap my brain around what had just happened. I was still in shock when a nurse commented on how beautiful I looked. I realized I was still in full makeup — lashes and all — from the night before.

In the weeks following the surgery, I was amazed by how much better I felt physically. I didn’t have the labored breathing. I wasn’t tired. But mentally, I struggled. I was scared that I was going to have another heart attack. I tiptoed around my life in a state of anxiety waiting for the other shoe to drop.

I was also depressed. I thought I was doing everything right before the heart attack and yet it still happened. I felt damaged in a way — like it was my fault. It took some time, but I started to see a therapist and quickly learned that being mindful of your mental health after a traumatic health event is just as important as taking care of your physical health.

When I talked to family and friends about what happened, everyone said the same thing: You’re too young to have a heart attack. Most people, like myself, thought you had to be older and experience chest pain — but it’s not like the movies. Women can have different symptoms than men, including severe heartburn, back pain and nausea just like I did. And the forgetfulness was also a sign due to the reduced blood flow to my brain.

Tricia Marciel2019

I wanted to spread the word, so I contacted my local chapter of the American Heart Association. I started speaking at events for heart attack survivors and sharing my experience with myocarditis, which was on the rise in young people during Covid. In 2002, I was honored to be an ambassador for the American Heart Association’s Go Red for Women movement to help raise awareness about heart health.

I’ve learned that a heart attack can impact a woman’s life in ways you probably wouldn’t think of. For example, I couldn’t continue taking birth control pills and I’m not a candidate for hormone therapy because hormones increase the risk for a cardiovascular event. Also, I was devastated to learn that I couldn’t be a bone marrow donor despite being a match for someone who really needed it.

Looking back, I wish I’d advocated for myself more during visits with healthcare providers. I would’ve asked more questions when told we’d “monitor” my cholesterol levels but that didn’t include a timeline or the fact that high cholesterol could lead to a heart attack. I would’ve educated myself about blood work and the numbers and the signs and symptoms of heart attacks in women.

Going through such a terrifying health scare changed my perspective on life. Not long after the heart attack, I quit my corporate full-time job to focus on singing and entertaining — mainly on cruise ships around the world.

So far, I’ve been to 37 countries and I wake up excited to do what I love every day because I know all of it can be gone in an instant — so why not live the life you want to live? Just make sure you’re taking care of your heart along the way.

Have your own Real Women, Real Stories you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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Grief and Loss Are Different When You’re the Caregiver


As told to Jacquelyne Froeber

November is National Family Caregivers Month.

My mom was my biggest fan. After I published my first novel, she came to all my author talks. At the end of each session, I’d ask if anyone in the crowd had questions, and she was always the first one to raise her hand. “I’m Vicki, your mother,” she’d say standing up. Everyone would laugh. “My daughter is a brilliant writer — this is a brilliant book.”

People thought my mom was adorable, but I was so embarrassed. I said, “Mom, you cannot announce to everyone how great your daughter is and then ask me questions at every reading.” She said OK and then ignored me. That was just who my mom was — she radiated positivity and joy, and she was passionate about supporting women — including, and most especially, her daughter.

After my father passed away in 2014, my mom moved to Los Angeles. She lived in a 55 and older community about five minutes from my house. Although she was independent, she was living with a brain tumor. It wasn’t cancerous but it limited her vision in one eye and caused balance issues. Still, my mom was able to do mostly everything on her own: go to the supermarket, get her nails done, take a memoir writing class.

Then the fender bender happened. My primary care doctor, who was also my mom’s doctor, told us she didn’t think mom should drive anymore — her eyesight was too bad.

I knew giving up her car was a big deal for her — driving was her independence. But I quickly realized it was a big change for all of us.

I became mom’s primary caregiver after that, but I still had two of my three kids at home that I was driving to doctor’s appointments, school, soccer practice, martial arts and all the other places they needed to be.

I started to feel like I was drowning in demands. On an average day, I would go pick up mom for an appointment or to go to the grocery store and my phone would buzz the entire time.

“I need the reservation number for the plane tickets.” — Daughter

“I need a ride home after practice.” — Son

“I need money for lunch.” — Youngest

“Did you respond to the text about the reservation?” — Husband

“I need a walk.” — Family dog

OK, our dog never made demands over text, but I still felt guilty. I was always running around trying to balance the needs of my kids and my mom. There were also the emotional needs and teenage angst that came with everyday life. And my mom had emotional needs, too. I tried to stay present in the moment when I was with her, but I was often distracted. I felt like I was falling behind as a daughter, mom and wife.

Robin and her dog, Shiloh, 2024Robin and her dog, Shiloh, 2024

Some days, I wanted to pull the car over and cry. I was so overwhelmed physically and mentally. But frankly, I didn’t have time.

In October 2019, things got worse. My mom fell and hit her eye — the good one. The injury took her eyesight and then she was almost completely blind. She needed in-home care and therapy, and it was up to me to find the best care team to help with all her new challenges.

Then Covid started and everything went dark. The in-home care plans stopped. Everything was closed and planned doctor’s visits and therapy just went away.

We were terrified. Everyone was terrified. To make matters worse, our home was not safe for my mom. My husband’s a physician so he was in and out of the hospital every day during the pandemic. We were terrified we were going to pass the virus to her. And I couldn’t go to her place. The elder community was very strict because they were trying to protect their vulnerable residents.

So, weeks went by before I was able to see my mom in person. When I was finally able to visit I was shocked by how downhill she’d gone in such a short time. She was confused and disoriented. The isolation and loneliness and lack of services had taken an irreversible toll on her. We did everything we could to lift her spirits and health overall, but Mom died not long after that.

The guilt was insurmountable. As her caregiver, I felt responsible for her. The blame and regret played on a loop in my brain: I made the wrong choices … I should have made different choices … if only I’d known my mom was at the end of her life … but how could I have known … I could have moved her in with me … but I was trying to protect her … but did I protect her? These questions plagued me.

The loss and the grief of losing a parent is something many people experience. But grief is a different shade when you’re their primary caregiver. There’s an extra layer of guilt and remorse — even though there’s nothing more you could have done. Because it’s not just grief, there’s a sense of responsibility and that’s very hard to handle.

Mentally, I was in a very dark place for a long time. I’d spent so much time worrying about my mom when she was alone and now that she was gone, I was worried about how she died.

About a year later, when the world opened back up, two of my three kids were off at school. My youngest started driving everywhere and didn’t need me like before the pandemic. Suddenly I was this rudderless person.

I had these two starring roles in my life — mother and daughter — which may have been difficult at times but they gave me a sense of purpose. So, who was I without my children and my mother?

I needed help moving forward, so I started seeing a grief therapist. She changed my life. She helped me see that I’d been a fierce advocate for my loved ones all my life and there was nothing I could’ve done to change what happened to my mom.

In addition to therapy, I began a regular writing practice where I shared my grief and loss each week on my blog. It was the best way for me to connect to myself and share my grief journey with others. After a year of writing, I went back and reread what I’d written. It remains a powerful map of what I’ve been through and how far I’ve come.

It’s been four years since my mom died. Since that time, I’ve moved from feeling her absence to feeling her presence in everything I do. I called upon her many times for help when I was writing my second book, “Heart. Soul. Pen.: Find Your Voice on the Page and in Your Life.” I still look for her hand in the crowd during author talks, but, even though I don’t see it, I feel it. I know she’s still right here with me.

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Living with Metastatic Breast Cancer Means the Pandemic Isn’t ‘Over’ for Me


As told to Jacquelyne Froeber

October is Breast Cancer Awareness Month.

I was in the produce aisle of the Winn-Dixie when a grown man coughed on me. Loudly.

I froze — a ripened tomato in my hand. I felt the weight of it and noted the subtle spray of the cough on its bright red skin.

This was no accident. I’d seen that man moments earlier change direction and make a beeline for me. As I stood there seething, I reminded myself to breathe. Sadly, this wasn’t the first time a random person saw me wearing a mask in public and coughed in my direction. But that didn’t mean I knew how to act when it happened.

In my fantasy, I take the tomato and throw it at him. As he turns, I tell him I have breast cancer and a compromised immune system. I watch his maskless face fall. “Metastatic breast cancer!” I add. And then I scoff. As if he knows what that means.

But the moment had passed. I took the spitty tomato up to the counter and told them to throw it away. “You don’t want anyone to take that home,” I said.

I was diagnosed with breast cancer in December 2019. I found the lump myself and like anyone in that position, I’d hoped I caught it early. My oncologist and surgeon said I did — the cancer was stage 2 and slow-growing. They recommended I have a double mastectomy to remove the tumors — and all my breast tissue — and put this whole thing behind me. Even better: I wouldn’t need chemotherapy or radiation.

Unfortunately, my bones were keeping a secret from me. The lymph nodes that were removed during the surgery showed that the cancer was more aggressive than previously thought. Follow-up scans confirmed the worst: The breast cancer had moved to my bones. There were lesions on my spine and hip. I didn’t have stage 2 breast cancer. I had stage 4.

When they told me the news, I instinctively put my hands on my stomach. I felt like I had been sucker punched. I struggled to breathe — stunned by the betrayal coming from inside my own body. And then my brain pretty much went on autopilot because, well, there’s not much you can do when you’re recovering from a double mastectomy and preparing for the unknown.

By March 2020, I was still healing but moving forward with my new treatment plan that included a lot of needles and pills and tests and scans for the foreseeable future. My family, especially my sister, helped me schedule all the things and lifted me up when I was down.

Then Covid hit and the whole world shut down.

My first thought: Who gets diagnosed with terminal cancer during a pandemic? I would have laughed if it weren’t so ridiculous. And utterly terrifying. Suddenly I was quarantined, alone and on the list of high-risk people up next to die from a virus none of us could see and had never seen before.

The irony was that I still had to go to the hospital for treatment, which meant I could be exposed to the virus at any time.

I’d started holding my breath for as long as I could under my mask, hoping every little bit helped against the invisible threat lurking inside the very place that was keeping me alive.

Still masking in public, 2024Still masking in public, 2024

But in October, yet again, I discovered the threat was coming from inside the house. I was diagnosed with cutaneous T-cell lymphoma on the bottom of my foot. Of all places! And it was a rare type of lymphoma. My first thought: Who gets diagnosed with two cancers during a pandemic?

The lymphoma really solidified how spectacularly crappy my immune system is. My white blood cells — the ones that help fight infection — were low because of treatment, but looking back, I’d always had a hard time getting over an illness or healing from a wound. I once had poison ivy for six weeks. I didn’t want to think about what would happen if I got Covid.

So, when the restrictions were lifted and the pandemic was “over,” I kept living my new normal as if nothing changed. I avoided crowded areas. I wore my mask in public. And I got the vaccine as soon as I could. Even though it doesn’t fight infection entirely, every bit helps.

My life today is pretty much the same as it was at the height of the pandemic. My trips out in the world have a mission-like precision: Mask up, get in, get out, exhale. I avoid doing things indoors as much as possible and, unfortunately, that means missing out on a lot of events and opportunities. And I know there are people who think my response is an overreaction.

I’ve also had to learn that there’s a tipping point where people are only going to accommodate your needs for so long — if at all. “There are just … so many of us. And so few of you,” someone said to me, wearily. I’m so sorry to tell you that this just isn’t true. About 7 million people in the United States are immunocompromised and a lot of us are still trying our best not to get deathly ill from Covid.

So I still wear my N95s. I avoid crowded indoor spaces. I watch the surges come and go. I’ve watched some people fade out of my life and others advocate for me with fierce kindness. I’ve also gotten to know the pleasure of my own company very well, and I have to say: If you don’t have the patience to make room for me, you are really missing out. (I’m kind of hilarious.)

I understand that Covid isn’t even a thought for some people anymore, but it’s still a very real threat to me. Because I’m immunocompromised, there’s no telling how sick it could make me. And, I no longer trust my body to protect me because it’s failed me in such a spectacular way. So I have to do everything I can to not get seriously sick — or even die.

But there are days when I wonder if maybe I am being ridiculous. Maybe I should go to that indoor concert or into the grocery store without my mask. But then I remind myself that I’m living with two cancers and I’ve been through a pandemic. I don’t know what the future will bring, but I’ve made it this far by trusting my gut. I’m not going to stop now.

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My “Small” Cancer Turned Out to Be Stage 4 Breast Cancer


As told to Jacquelyne Froeber

October is Breast Cancer Awareness Month.

December is my birthday month. It was also the month I scheduled all my yearly health exams, including my mammogram.

But December 2014 was busy, I guess. (I burned all my journals from that time — but that’s another story.) I don’t remember why I didn’t go for my mammogram, but I didn’t get one until June 2015.

The day after the exam I got a phone call. There was something abnormal in the imaging, and I needed to have a biopsy. I was a nurse, so I knew that wasn’t great news, but I had the biopsy that week and went about my normal routine.

As an on-call hospice nurse, my schedule was pretty consistent. I worked seven days on, seven days off and — most important — I took a nap between 2 p.m. and 4 p.m.

My husband and kids knew not to call me during that time, so when my phone started buzzing during my nap, I was pretty annoyed. It was the provider’s office. “This isn’t a good time to talk,” I said.

“You have breast cancer,” the woman on the phone said.

“OK, can you call me back tomorrow? I’m on call at 5.”

She was startled. But she said OK. I hung up, rolled over and went back to sleep.

I know it sounds strange to just fall back asleep, but my patients depended on me. And I needed that nap. The next day my provider called and I made the time to listen. He said the cancer was small enough for a lumpectomy. So we scheduled the surgery for the following week.

By that Thursday, though, I’d noticed new imaging requests in my patient portal but no one could tell me why they were ordered.

When I finally got the nurse on the phone, I started asking her questions, and she cut me off. “Don’t worry about the tests — I do this all the time,” she said. “All you have to do is show up on Monday.”

I paused and felt the sting of being dismissed. “You may do this every day, but I’m not diagnosed with breast cancer every day,” I said. “And I will call the doctor and let him know why I’m not having the surgery with you. Have a good day.”

I hung up the phone. My mind and heart were racing. I’d just fired my provider! But I couldn’t stay with an office that wouldn’t answer my questions … right? Tears sprang to my eyes.

My husband helped calm me down and we found a different provider. I’d have to wait another month for the lumpectomy — but that was fine with me. During that time, I had the other tests that were ordered, including a PET scan. That scan showed the cancer had spread to the bone.

I had stage 4 breast cancer.

When I heard the news I was shocked. Within a week, I went from “small” cancer and a lumpectomy to plans for a bilateral mastectomy and chemotherapy. I learned that stage 4 — also called metastatic — cancer meant I would need ongoing treatment probably for the rest of my life.

Amid all the confusion and depressing news — there was a bright spot. My daughter had just found out that she was pregnant despite being told she couldn’t have children. The thought of holding my grandchild gave me extra hope that I could get through the surgeries and treatments and also keep my quality of life so I could enjoy time with my family.

The months went on, and after the baby was born, I’d put him on my chest despite the double mastectomy, and we would sleep like babies on my days off of work.

I continued working as much as I could through chemo but it was tough. I felt weak. I couldn’t even drive to work — my husband had to drive me. But I put on my bandana and pushed forward. In 2016, I got the best news: My scans showed no evidence of disease.

In 2017, I felt good enough to move, and my husband, John, and I relocated to a small town in eastern North Carolina. I got a new job as a hospice nurse.

We were only there for about six months when I had a blood clot in my left lung. Then, because of the blood thinners I was on, I had a ministroke. And then one more devastating blow: My provider said I couldn’t work anymore.

I was crushed. I’d been working for almost 40 years. I was the primary breadwinner in our family. Now, I wasn’t going to have income or insurance.

I spent the next seven days looking for financial resources that could help me pay for my medical treatments. I applied for disability — and got it — but it wouldn’t kick in for five months.

Then I came across an organization called Living Beyond Breast Cancer that offered funding and resources for people with metastatic breast cancer. They were hosting an annual conference in Philadelphia, and I decided to go.

At the time, I really didn’t know much about metastatic breast cancer outside of my personal experience. I’d also never met another Black woman with metastatic breast cancer. When I walked into the conference hall, I was blown away by the sheer number of people there. I probably looked like a deer in headlights going from booth to booth, but everyone was so kind and helpful. I got the financial guidance I needed. I heard stories from women who were eight and nine years into their diagnosis and thriving. I bonded with other Black women with metastatic breast cancer. All of it changed my life.

After the conference, I signed up for everything I could do as far as advocacy work for the organization. I traveled all over the U.S. and learned about the disease and new treatments and brought information back to my rural community in North Carolina. I’d learned that breast cancer rates are higher in women who live in rural areas and death rates are higher too compared to the national average. And these numbers are worse for women of color.

Early on, it became clear to me that information regarding Black people and metastatic breast cancer was lacking. But it wasn’t clear why. In 2019, I started working with an epidemiologist, Marina Pomare Kaplan, on a research project and survey that focused on the reasons why Black people weren’t being included in these clinical trials.

Unfortunately, Marina passed away in 2020. I thought that meant our research efforts were done, but a few months later, the Metastatic Breast Cancer Alliance contacted me and wanted to move forward.

We started the BECOME research project based on the research Marina and I had been doing. BECOME stands for Black Experience of Clinical Trials and Opportunities for Meaningful Engagement. And what we found with our survey was a big shocker. The overall reason why Black people weren’t being involved in clinical trials? It was because no one was asking us to participate. No one was having a conversation with us.

From there, I thought, Let’s find a way to get this information to providers. We planned an event the day before the San Antonio Breast Cancer Symposium in 2022, which is basically the biggest breast cancer conference in the world. It was my goal to have 100 people there — or fill half the seats in the room.

But that didn’t happen. The event was so packed I had to grab spare folding chairs. People lined up against the wall to listen to our research.

As I looked out at all the different faces in the room, I was overcome with emotion. I felt so proud to get all these people — providers, pharmaceutical reps, women of color — together in the same room to learn about the importance of including Black people in clinical trials for metastatic breast cancer.

I thought about how far I’d come in my own journey — although I hate to call it a journey. It just doesn’t sound right when you’re talking about being bald and going to chemo. But being a patient advocate helped me help other people when I couldn’t through nursing anymore.

None of us signed up to be in this club. But all of us deserve representation and research to help us live our best lives with metastatic breast cancer.

Resources

BECOME – Black Experience of Clinical Trials and Opportunities for Meaningful Engagement

Living Beyond Breast Cancer

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I Was “Too Young” to Have Colon Cancer


Español

As told to Shannon Shelton Miller

I was thrilled to be pregnant with my first child at 29. Everything went well for about eight months — until the day I went to the restroom and the toilet was full of blood. I immediately called my OB-GYN because I was scared something was wrong with my baby.

At the appointment, he assured me we both were fine. It was probably just
hemorrhoids or my baby was starting to rest on my organs as he grew bigger, leading to some bleeding.

But new symptoms started to show up. I was dizzy, had bad abdominal pains and couldn’t sleep at night. My OB-GYN told me these were all normal during pregnancy. I had never been pregnant before, so I figured that made sense.

pregnant Jenna2016 (Photo/Michael D Images)

The bleeding and crushing fatigue didn’t stop after I gave birth to my son, Cameron. Once again, I was told this was normal for a new mom. Even as I continued to have vaginal and rectal bleeding months after giving birth, my OB-GYN only suggested changing my birth control method.

When Cameron turned 1, I knew something had to give because the bleeding wasn’t stopping. This time, I went to a primary care physician, who first gave me pills for
irritable bowel syndrome. Just in case that didn’t work, he said, he’d send a referral to a GI specialist.

Weeks later, I had to see the specialist since the pills had done nothing. “You’re way
too young to be sitting in my office,” he said. “What’s going on?” I told him about my symptoms, and he ordered a colonoscopy.

When I woke up in the operating room after that procedure, the doctor and four nurses were there, along with my husband, Derrick. The room seemed too full, and I asked what was happening.

My doctor showed me photos of my colon and told me I had cancer.

“No, I don’t,” I said. We had built a rapport, so I started to laugh a little. “Ok, what’s really going on?”

He kept a straight face. “I would never joke about something like this,” he said. “You definitely have cancer.”

A few weeks later, my mother, my husband and I met with the oncologist. He walked past us, sat down and said, “Well, you have stage 4 cancer and …” He continued to go on, but I didn’t hear anything after that. I just knew it couldn’t be as bad as what I was hearing in my head.

It was. He said I was an exceedingly rare case because of my age and good health. Genetic testing showed nothing. We had no family history of cancer. I was healthy, I played sports, I didn’t grow up eating red meat — I couldn’t understand it.

I didn’t want to think about treatment at that moment. I told my family I wanted to go to the sunflower patch by my house because I’d never been. We picked sunflowers and took photos. It was such a nice day. Afterward, we picked up my son from daycare, and I held him the rest of that day.

Scott Family picking sunflowers

The last seven years have been very difficult. I’ve had multiple rounds of chemotherapy and surgeries. After my diagnosis, they removed a foot of my colon, two parts of my liver and my gallbladder. I was very weak and couldn’t walk. My toddler son couldn’t sit on my lap, and I couldn’t pick him up. I couldn’t even hold him by myself.

The cancer was already in my liver when I was diagnosed. And, over time, the cancer spread to my lungs and my lymph nodes. I developed spots all over my body, but one on my heel was noticeably darker, and I asked my oncologist to check it out. It turned out to be precancerous
melanoma. I had to have surgery to remove it, and it was incredibly painful because it was on my heel and they couldn’t numb it. They took out a chunk of my heel and I couldn’t walk, drive or do anything for myself for four months. I just was helpless.

Scott Family2023 (Jommy Photography)

There were some bright moments during that time. I was in remission for most of 2021 and 2022, and 2022 was one of the best years of my life. I got back into working out, doing Pilates, hanging with my friends and playing baseball with my son — it was wonderful. I was even able to go off treatment. But before that Christmas, cancer was found in the lymph nodes in my chest. My doctors wanted me to start treatment before Christmas, and I said I couldn’t. I had to have my perfect Christmas first. I’m glad I did, because it was wonderful.

I started treatment again in January 2023, and I have to continue treatment for the rest of my life. My regimen consists of three days of chemotherapy in the hospital and at home, and then I’m off for three weeks. I still stay busy as a chief administrative officer for a tech-focused startup. I work a lot and travel a lot — I had life goals before I got sick, and I’m determined to do my best to meet those goals. I’m 38 now, Cameron is 8, and I try to enjoy as much time with my family as possible.

I started sharing my story after going to a Colorectal Cancer Alliance event in 2019. At the dinner, they were asking people in the audience to stand up and share their stories. There were actors and dancers on stage who would act out whatever you were saying. It was very cool.

I was nervous, but I stood up and shared my story. People were clapping and coming up to give me a hug. There wasn’t a dry eye in the room.

To this day, no one knows why I developed colon cancer and
why it happened during my pregnancy. Was it the rapid generation of cells that took place to grow a new human inside my body? That’s the only link I can think of, because I’m the only person in my family to have it. Because I had no family history or risk factors for colon cancer, I know my young age wasn’t helpful in getting an early diagnosis.

That’s why I always tell people to do your best to advocate for yourself with your healthcare providers because you don’t know what you don’t know. No doctor knows everything. Tell your doctor that you aren’t leaving that office until they look deeper into your issue because it’s your body, and you know best when something is wrong.

This educational resource was created with support from Daiichi Sankyo and Takeda.

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Era “demasiado joven” para tener cáncer de colon


English

Tal como se relató a Shannon Shelton Miller

Estaba emocionada por estar embarazada de mi primer hijo cuando tenía 29 años. Todo estuvo bien por aproximadamente ocho meses hasta un día en el que fui al baño y el excusado terminó lleno de sangre. Llamé inmediatamente a mi ginecólogo obstetra porque temía que algo podía estar mal con mi bebé.

En la consulta, me aseguró que ambos estábamos bien. Probablemente eran solo
hemorroides o tal vez mi bebé estaba empezando a descansar sobre mis órganos a medida que crecía, causando un poco de sangrado.

Pero síntomas nuevos empezaron a manifestarse. Tenía mareos, dolores abdominales y no podía dormir en la noche. Mi ginecólogo obstetra me dijo que todo esto era normal durante el embarazo. Nunca antes había estado embarazada, así que asumí que eso era lógico.

pregnant Jenna2016 (foto/ Michael D Images)

El sangrado y la fatiga devastadora no pararon después del nacimiento de mi hijo Cameron. Una vez más, me dijeron que eso era normal para madres nuevas. Mi ginecólogo obstetra solo sugirió cambiar mi método anticonceptivo, a pesar de que seguía teniendo sangrados vaginales y rectales meses después del parto.

Cuando Cameron cumplió 1 año, sabía que algo estaba ocurriendo porque el sangrado no paraba. Esta vez, tuve una consulta con un médico general, quien primero recetó píldoras para un
síndrome de intestino irritable. Emitió una referencia a un especialista GI en caso de que estas píldoras no funcionen, dijo.

Semanas después, tuve que tener una consulta con el especialista porque las píldoras no funcionaron. “Eres
demasiado joven para estar sentada en mi oficina”, dijo. “¿Qué pasa?” Le indique mis síntomas y solicitó una colonoscopía.

Cuando desperté en la sala de operaciones después de ese procedimiento, estaban ahí el doctor y cuatro enfermeras, junto con mi esposo Derrick. La sala parecía estar llena y pregunté qué pasaba.

Mi doctor me mostró fotos de mi colon y me dijo que tenía cáncer.

“No, no lo tengo”, dije. Habíamos establecido una buena relación, así que empecé a reír un poco. “Está bien, ¿qué pasa en realidad?”

Él mantuvo una cara seria. “Nunca bromearía de algo así”, dijo. “Definitivamente tienes cáncer”.

Unas semanas después, mi madre, mi padre y yo nos reunimos con el oncólogo. Entró, se sentó y dijo, “tienes cáncer de etapa 4 y…” Siguió hablando, pero no escuché nada después de eso. Simplemente imaginé que no podía ser algo tan malo como lo que estaba escuchando.

Lo era. Dijo que era un caso realmente raro debido a mi edad y mi buena salud. Las pruebas genéricas no mostraron nada. No teníamos antecedentes familiares de cáncer. Era saludable, practicaba deportes, no comía carne roja cuando crecí y no podía entender lo que estaba pasando.

No quería pensar en el tratamiento en ese momento. Le dije a mi familia que quería ir a la parcela de girasoles cerca de mi casa porque nunca la había visto de cerca. Escogimos unos girasoles y tomamos unas fotos. Era un día hermoso. Después, recogimos a mi hijo de la guardería y lo mantuve en mis brazos el resto del día.

Scott Family picking sunflowers

Los últimos siete años han sido muy difíciles. Tuve varias rondas de quimioterapia y cirugías. Después de mi diagnóstico, removieron un pie de largo de mi colon, dos partes de mi hígado y mi vesícula biliar. Estaba muy débil y no podía caminar. Mi hijo no podía sentarse en mi regazo y no podía levantarlo. Ni siquiera podía sostenerlo en mis brazos sola.

El cáncer ya estaba en mi hígado cuando me diagnosticaron. Y, con el tiempo, el cáncer se propagó a mis pulmones y a mis ganglios linfáticos. Aparecieron manchas en todo mi cuerpo, pero se notaba que una en mi talón era más oscura y le pedí a mi oncólogo que la examine. Resultó ser un
melanoma precanceroso. Tuve que someterme a una cirugía para removerlo, fue increíblemente doloroso porque estaba en mi talón y no pudieron adormecerlo. Sacaron una parte de mi talón y no podía caminar, manejar ni hacer algo sola durante cuatro meses. Simplemente estaba indefensa.

Scott Family2023 (Jommy Photography)

Hubieron algunos momentos alegres durante ese tiempo. Tuve remisión durante la mayor parte de 2021 y 2022, y 2022 fue uno de los mejores años de mi vida. Volví a hacer ejercicio, a hacer pilates, a compartir mi tiempo con amigos y a jugar béisbol con mi hijo, fue maravilloso. Incluso pude interrumpir mi tratamiento. Pero antes de la Navidad de ese año, detectaron cáncer en los ganglios linfáticos de mi pecho. Mis doctores querían iniciar el tratamiento antes de la Navidad y dije que no podía hacerlo. Quería tener una Navidad perfecta primero. Me alegra haberlo hecho porque fue maravillosa.

Empecé nuevamente el tratamiento en enero de 2023 y debo tenerlo por el resto de mi vida. Mi régimen consiste en tres días de quimioterapia en el hospital y en casa y luego no tengo que tener tratamiento por tres semanas. Todavía me mantengo ocupada como directora administrativa de un emprendimiento que se enfoca en la tecnología. Trabajo y viajo mucho, tenía metas personales antes de enfermarme y haré lo más posible para alcanzarlas. Ahora tengo 38 años, Cameron tiene 8 años y trato de disfrutar el tiempo con mi familia lo más posible.

Empecé a compartir mi historia después de ir a un evento de Colorectal Cancer Alliance [
Alianza contra el cáncer colorrectal] en 2019. En la cena de ese evento, pidieron a personas de la audiencia que se pongan de pie y compartan sus historias. Había actores y bailarines en el escenario que dramatizaron lo que se decía. Fue genial.

Estaba nerviosa, pero me puse de pie y compartí mi historia. Las personas aplaudían y venían a darme abrazos. Nadie pudo contener sus lágrimas.

A la fecha, nadie sabe por qué desarrolle cáncer de colon ni
por qué ocurrió durante mi embarazo. ¿Fue la generación rápida de células que ocurrió para que un nuevo ser humano crezca dentro de mi cuerpo? Esa es la única conexión que se me ocurre porque soy la única persona que lo tiene de mi familia. Puesto que no tengo antecedentes familiares ni factores de riesgo de cáncer de colon, sé que mi temprana edad no fue útil para obtener un diagnóstico temprano.

Es la razón por la que siempre aconsejo a las personas que hagan lo más posible para defender sus derechos con sus proveedores de atención médica porque uno no conoce lo que no sabe. Ningún doctor lo sabe todo. Dile a tu doctor que no saldrás del consultorio hasta que evalúe tu problema en una forma más detallada porque es tu cuerpo y tú sabes mejor que nadie cuando algo está mal.

Este recurso educativo se preparó con el apoyo de Daiichi Sankyo y Takeda.

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