Tag: real women real stories

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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The Pain in My Neck Turned Out to Be Fibromyalgia


As told to Jacquelyne Froeber

I was lifting weights at the gym when I felt something rip in my neck. I wanted to scream, but the sudden burst of fiery pain took my breath away. “Don’t panic,” I told myself. It was probably just a neck strain or a pinched nerve.

I went home and put ice on it.

The fire continued to burn.

The year was 2000. We’d all survived Y2K. I was 26 years old and two finals away from surviving my first year of medical school.

I expected the pain in my neck to get better as finals week went on — but it got worse. I studied human anatomy with a ring of fire supporting my head. Then the flames started to spread down my back and continued moving south.

Somehow, I made it through finals, but there was no relief from the burning pain. It was officially time to panic.

What the hell was wrong with me?

I went to medical school in Boston so there were a lot of fancy healthcare providers and specialists to choose from. One by one, appointment after appointment, everyone said the same thing: “We don’t know what’s wrong with you.” There was nothing to see on my scans. No neck injury to speak of.

To add insult, some providers said I was imagining the pain. Others said depression was the problem. Everyone said I needed to exercise more.

I was already exercising — hence the gym injury — and I tried to do more. But fatigue had set in, and I was so tired all the time. I woke up exhausted as if I didn’t sleep at all during the night. I was also stiff and sore — like I’d run a marathon and then gotten hit by a truck on repeat.

I was running on fumes by the time school started again. I had just enough in me to study. I knew I couldn’t go into a hospital environment and work with patients when I felt so bad. So I took a medical leave of absence my third year — which was basically unheard of — but I knew I didn’t have a choice. I had to get better or give up on my dream of being a doctor.

By this time, I was desperate. I’d spent every penny I had on alternative medicine, specialists, acupuncture and herbs. Nothing helped.

Someone along the way suggested I see a chiropractor so I made a half-hearted appointment. During the exam, he pressed on a spot in my upper body and I almost fainted. “That’s so painful,” I cried out. He pressed on other areas with the same result. “I think you have fibromyalgia,” he said.

“Fibro-what?” I asked. I’d never heard that term before in medical school — or ever. It was the first time someone gave a name to the pain. It was the first time in years I had hope.

I practically sprinted to the bookstore and headed to the health section. I made my way to “F” and found one copy of “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.” I clutched the book in my hot little hands and spent the next 24 hours reading about fibromyalgia.

Everything in the book described me. I was nodding along with every line. The burning, the pain, the brain fog — it was all me. It was exciting — thrilling — to finally have some answers. It was devastating, however, when I learned that medical treatments were basically nonexistent at the time.

Back then, fibromyalgia was considered a “wastebasket diagnosis,” which meant that healthcare providers thought the symptoms were either fake or all in your head. And there wasn’t much doctors could offer as far as treatments.

Learning what the medical community thought of my condition lit a new — different — fire within me. I knew I had to get better enough so I could help other people find a better way to live.

Over the next few months, I used myself as a guinea pig and tracked the things that made me feel better. I was sensitive to dairy, so I changed my diet. I prioritized stress management and sleep hygiene.

A type of therapy called myofascial release was the pain changer for me. The technique involves stretching the tissues around the muscles that can be inflamed for people with fibromyalgia. After the first treatment, I felt a small amount of pain relief in my neck. I knew I was on to something big.

The combination of lifestyle changes and myofascial release therapy brought my pain down from a 7 to a 3. I felt good enough to go back to med school.

Even though I had an idea what the medical community thought about fibromyalgia, hearing it in person almost broke me. Early on in the school year, a teaching physician announced that fibromyalgia didn’t exist. Other colleagues said people with fibromyalgia were making it up to get disability benefits. The consensus was that people with fibromyalgia were lazy. Hopeless. A waste of “our” time.

I wanted to yell at the top of my lungs that no one had a clue what it was like to live with fibromyalgia. But I kept to myself. If this is what my colleagues thought about my condition, what would they think about me?

At the end of school, I had to do a presentation in front of all my peers, physicians and teachers. I presented a case study on fibromyalgia and revealed, at the end, that it was about me. I started weeping right there at the podium. I sobbed uncontrollably in front of hundreds of people and I couldn’t stop. For so long I’d been hiding this secret. I looked fine on the outside, but on the inside, I was going through hell.

Most importantly, I wasn’t making it up. And I wasn’t alone.

After the presentation, I was shocked at the amount of people who lined up to thank me for talking about fibromyalgia. So many people said they had family, friends or patients going through a similar situation. The reaction was so positive — it gave me hope that things could change.

Ginevra Liptan, M.D. 2023

After school, I dedicated my career to fibromyalgia and pain conditions. Thankfully, the medical community changed and fibromyalgia is a recognized chronic condition and there are FDA-approved medications available to help treat it, along with a variety of alternative treatments that can be helpful.

The problem is that fibromyalgia is far more complex than just taking medication. Each person is different and some people really struggle to find any relief. I’m lucky in the sense that medication and lifestyle help me stay around a 2 or 3 on the pain scale. It’s manageable. And in the absence of a cure, that’s all anyone with chronic pain wants — to feel good enough to do the everyday things you have to do.

In 2016, I published the book, “The Fibromanual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor,” inspired by that desperate trip to the bookstore so many years ago. The information still holds up today, but there’s also so much new research and insight into fibromyalgia out there. It gives me hope that one day soon all of us with fibromyalgia can defeat it.

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After a Traumatic Vaginal Birth, I Live with Bladder Leakage



This educational resource was sponsored by Poise, a brand of Kimberly-Clark.

As told to Nicole Audrey Spector

I’m small in stature. But you wouldn’t guess that I’m a petite woman if you went only by my sneeze, the sound of which resembles the war cry of a goose. And observers don’t get to hear just one sneeze. They’re met with at least a few — one after the other. A proper gaggle.

My mom has the same loud sneeze, and as a kid, I’d make fun of it — not so much the chandelier-rattling sound that went with her achoos, but the side effects of her sneezing.

Every time my mom had a sneezing fit, she peed herself. It wasn’t a secret.

“Oh, god, I peed!” she’d scream, then gallop to the bathroom, laughing. The same would happen when a coughing fit befell her. “I peed!!!”

She never seemed to be embarrassed, but I was embarrassed for her.

Now, at 41, I can relate to what my mother has been going through.

When I sneeze or cough, I often pee a little. Sometimes more than a little, if I already “have to go.”

Bladder leakage is a fairly new issue for me. It started after I gave birth to my son, Timothy, in 2022. It was my first time carrying a pregnancy full-term. And my first time having a creature with a head in the 100th percentile vacuumed out of my birth canal, after said head got stuck.

After having Timothy, it took a couple days for me to pee on my own. For the first day, I had a catheter. The second day, I walked to the bathroom by myself and sat on the toilet for what felt like a million minutes, unable to feel anything south of my belly button. It was important, a nurse said, that I pee on my own, without the catheter. When I finally achieved this, my nurse clapped for me. I cheered along, even though I really couldn’t feel the urine coming out, and surely couldn’t turn the stream off and on like I’d been able to before.

When I was released from the hospital after the standard 48 hours, I was sent home with a stockpile of hospital-issue mesh underwear and pads seemingly designed for elephants.

I thought the pads were just there to capture the discharge that would spill out in the first few postpartum days, but it turned out they were catching urine, too, as many a too-late, too-soiled trip to the bathroom revealed.

“A little urinary incontinence after a vaginal birth is normal,” my OB-GYN told me in an email, after I pinged her about two weeks later. I’d emailed her asking about whether the bladder leakage was to be expected.

I told my friend, Sophie, a yoga teacher who does a lot of great work with pregnant and postpartum women about the bladder leakage.

She told me I probably had a pelvic floor injury and she told me to go to a pelvic floor therapist “sooner than later” to address the problem.

Instead of consulting with a pelvic floor therapist as she advised, I did nothing.

Looking back, I think I was really just too tired to believe that anything was wrong or unusual. What’s more, I didn’t feel like “me.” I felt like an alien had taken host in my body. I was a total mess, and I just didn’t want things to be messier than they already were by bringing some certified expert into the mix to be like, “What a mess!”

This was nearly two years ago. The bladder leakage has lessened from what it was right after giving birth, but it’s not gone away. Not at all. What has gone away, however, is my shock about it. I’ve gotten used to peeing a bit when I sneeze, cough or even, sometimes, laugh.

Though I never leak to the extent that I saturate myself completely, I do dribble, and this is enough to motivate me to bring a spare pair of underwear in my bag when I go out. If I leak, I usually just throw out the soiled pair and change into the fresh ones.

It’s not an ideal solution (it’s bad for both the planet and my wallet), but I have yet to come up with something better. Unlike my mother, I don’t find peeing myself particularly humorous. It’s embarrassing, especially when I’m out in public.

And I still wonder, “Is this normal?”

I’ve talked with other moms who’ve had vaginal births, and they all say they can relate. They usually pee a little when they sneeze, cough or laugh a lot, too. Additionally, I recently learned that up to 1 in 2 women experience urinary incontinence.

Does the fact that bladder leakage is so common among women make it “normal”? Is there anything I can do to make this stop? I’ve tried Kegels, per the advice of Sophie and many mom blogs, but I have no clue if I’m doing them correctly and they have yet to make any difference that I can feel.

I’ve reached a breaking point: I need to know if bladder leakage is just a way of life for women like me. Right now, I’m looking for a pelvic floor therapist, and, honestly, wishing I’d done so sooner.

In the meantime, I’m going to explore products like pads or disposable underwear to make urinary incontinence less of a hassle. Throwing panties out in restaurant bathrooms isn’t a good long-term solution — nor is feeling bad about myself all the time

*Names have been changed for privacy.

Resources

National Association for Continence

Poise Incontinence Pads

This educational resource was sponsored by Poise, a brand of Kimberly Clark.

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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After Living with Postpartum Bladder Leakage, I Was Able to Treat It


This educational resource was sponsored by Poise, a brand of Kimberly-Clark.

As told to Nicole Audrey Spector

After giving birth, vaginally, to my first child, I experienced bladder leakage. It happens, I was told by my medical team. It would likely go away. And it did. But after the birth (also vaginal) of my second child, the bladder leakage came again. Only this time, it didn’t go away.

At first, I wasn’t concerned because I’d been told that postpartum bladder leakage is a common experience. But this just wouldn’t stop, and, what’s more, it was quite intense. I would pee whenever I coughed, sneezed or laughed. Often, it was a lot more than just a dribble. I relied on pads every day. I stopped wearing dresses and skirts and started wearing black pants to hide the leakage when it got bad — and I could never predict when it would get bad.

I’ve always been a very social and active person. I love hiking, running, swimming and going out with friends. Living with bladder leakage held me back from all the activities that made me feel alive. Who wants to have an accident while jogging? Or be at a party and have to dash to the bathroom without warning to avoid an accident?

Worst of all, I couldn’t show up for my kids the way I wanted to. I wanted to run and jump with them at the playground, but was too worried I’d have an embarrassing accident.

Out of fear of embarrassment, I became isolated, withdrawn and a stranger to myself. No, I realized, this is not something I have to just accept! Oh, and I tried Kegels. So many Kegels. But those only seemed to make the leakage worse.

After more than two years, I decided to take action. I was a physical therapist, and in my practice, I was committed to the understanding that everything in the human body is connected. So, I thought to myself, “I treat people using a whole body approach. I need to use that approach on myself.”

Lindsey showing a skeleton of a pelvis2023 (Photo/Shane Geddes)

It took me several months to piece together an understanding of bladder leakage, its causes and how to best treat it. I did a ton of research on my own. It was a huge journey, and I relied heavily on my medical background to make sense of it all. Something I realize not everyone else can do.

I considered a few injuries I’d had in my past — nothing too serious, but still enough to affect how my body and bladder functioned. For example, I’d hurt my knee and my tailbone, and afterward, had adapted to some unhelpful posture and moving strategies. I believe the force from these injuries acted on my pelvis, bladder and pelvic floor, ultimately leading to bladder leakage.

I realized that it wasn’t that I had loose pelvic floor muscles, as I’d previously suspected (and what women usually think is the cause of their bladder leaks). It was the opposite. I actually had overactive pelvic floor muscles that were holding on for dear life all day long. Many people don’t know this: Tight muscles are not efficient or even necessarily strong muscles. Relaxation is key to building strength, and overactive muscles don’t allow for that relaxation.

I retrained my pelvic floor muscles, focusing on lengthening and strengthening and incorporating whole body exercises. I also used methods to manage pressure and stress, like stretching, mindfulness and breathing exercises. By focusing on both the physical and emotional parts of my condition, I found a complete solution that finally brought relief.

The pelvic floor and bladder are affected by emotional stress. And as a mom of two little ones with a partner who was often traveling for work, I was under a lot of stress. And that can show up as overactivity in those muscles, as well as sensitivity in the bladder.

After just a few months of doing theappropriate exercises, looking beyond the pelvis, balancing my stress and calming my bladder, my leaks lessened and soon stopped entirely.

Now, I don’t recommend that others go down the rabbit hole I went down to resolve my bladder leakage. Instead, I suggest they seek out a pelvic floor therapist who considers the whole body — not just the pelvis. It’s never too late. I lived with bladder leakage for more than two years before I got the help I needed. To manage my leaks during that time, I relied on pads, which provided much-needed comfort and reduced the fear of embarrassment or needing to change my clothes.

Once I finally overcame my bladder leakage, I wanted to help others who are going through what I went through. Now, I work as a pelvic floor physical therapist and am honored to be in this space, helping to empower other women of all types.

I encourage my clients to use pads, or leak-proof underwear as a practical solution for managing leaks while we work together to address the root cause. I also urge women experiencing bladder leakage to get help from a professional and not feed the myth that long-term bladder leakage is acceptable. It’s common after childbirth (even Cesarean moms can experience it), yes, but that doesn’t mean it’s something to be ignored.

I’ve noticed that bladder leakage is rarely talked about in most circles. The bladder is a taboo part of the body. Even with our healthcare providers, we may be ashamed or embarrassed to talk about leakage, especially if we aren’t doing the Kegels we’ve all heard we “should do.”’ We may think it’s our own fault that we’re living with bladder leakage. And so, we clam up, and by doing that, we increase the stigma.

But the pendulum can swing too far in the other direction, too. We may laugh it off with our mom friends, assuming it’s just how things are after giving birth. But again, bladder leakage may be common but that’s not the same as “normal” — and it shouldn’t be accepted as a permanent side effect of having had a baby.

We must shatter the stigma around bladder leakage. If you live with it, let the people in your life know what you’re going through. Most importantly, get the help you need. It’s out there and waiting for you.

Resources

National Association for Continence

Poise Incontinence Pads

This educational resource was sponsored by Poise, a brand of Kimberly-Clark.

Have your own Real Women, Real Stories 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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Taking Charge of My Finances Gave Me Strength During Loss


As told to Jacquelyne Froeber and Noelys Mendez

August 14 is National Financial Awareness Day.

I grew up in the countryside of Cuba in a traditional Cuban household.

My father was the provider for the family. He worked — a lot — on the small farm we owned and he took care of all of our finances. My mother also worked incredibly hard making sure we had everything we needed. She took the money my father gave her and magically tracked down food, cleaning supplies, clothing, etc., which was a full-time job considering where we lived.

Life moved at a slow pace in our small town, but when I turned 19, I fell in love and things started moving very fast. I went from my family home to married life and I became pregnant soon after the wedding. Two months after I turned 20, I gave birth to a baby girl. I fell in love with her the moment I saw her, and I knew I would do anything to protect her and keep her happy.

Unfortunately, I wasn’t happy in my marriage. I wanted to keep the dream of our family alive, but we weren’t right for each other, and we separated just two years after getting married.

I was devastated, but deep down, I knew it was the right thing to do. I knew we could both be happier than we were.

Still, it took me by surprise how happy I could really be. I met the love of my life about two years after the divorce. We had an instant connection, and I knew he was my person.

Damian was handsome, thoughtful and kind. Most importantly, he treated my daughter like his own.

We moved naturally into our familiar, traditional roles. He was the provider, and we never talked about bills or finances before or after we got married. But when I got pregnant, we started talking about moving to the United States. Cuba has its economic limitations, and we wanted our girls to have more opportunities and freedom to do whatever they wanted.

Osleidy and her daughter(s) and husband Damian in Cuba, 2008Osleidy and her daughter(s) and husband Damian in Cuba, 2008

In 2010, we were able to make our dream a reality and we moved to Florida. Damian found a full-time job as an auto technician, and I stayed home with the kids.

Damian continued to take care of all the bills, the house and the cars. Everything was in his name.

Like my mother, I did all the shopping with money he’d give me. When I used a credit card, he paid the bill.

Money wasn’t tight but I never took it for granted. Damian worked a lot — sometimes nights and weekends. I felt it was my job to help save us money, so finding the best bargains and deals became my super power. I never wanted him to think I would take advantage of his incredibly hard work.

We had 12 amazing years in the U.S. before he was diagnosed with liver cancer in 2022. The news was an absolute shock. I told the doctor that it must be a mistake. He was just 41! “Too young for cancer,” I insisted. Also, we had plans. We had a great life. We had two beautiful girls and places to go and things to do.

But cancer didn’t care.

The disease was relentless and cruel. For months, Damian stayed in bed at home, unable to work. I stepped in as his full-time nurse and quit my part-time job. There was always the hope that maybe things would turn around and he would miraculously get better. But that didn’t happen. And with no steady income, we went through money quickly.

I was in caregiving mode so I pushed the looming financial problems away. Then one day, out of the blue, it hit me. Damian wasn’t going to get better. Everything was on me now. My mother and my youngest daughter were living with us. I was responsible for keeping a roof over our heads. How in the world was I going to do that?

A flood of panic gripped my body and I gasped for air. It was all too much. “I can’t do this,” I whispered out loud. I was grieving. I was exhausted. I didn’t have the strength to push forward. I didn’t even know where to start.

But I knew who to ask. My eldest daughter was 25, and although she’s married, she’s in an equal marriage where she and her husband split the bills and ownership of their property.

I didn’t want to tell her that I needed help, but I had no choice. I had to step up and learn to do things for myself. For our family.

Osleidy with her mother and two daughters, 2024 Osleidy with her mother and two daughters, 2024

With my daughter’s help, we made a plan. The first thing I did was get every bill and a notebook. I added up all the expenses to see how much money was going out per month. I transferred all the bills into my name and the credit cards. I also had to take a look at my lifestyle. Since my husband had a good paying job, I had to be realistic that when I got a job, I wasn’t going to bring in as much money as he did (but hopefully one day!).

After Damian passed, I took a brief time to grieve and then I started working full time at a parts assembly factory. There were moments when I thought I couldn’t do it. I was 45 entering the workforce in a new career, but I’m so proud of myself and the strength that us women have, of our ability to reinvent ourselves for our family after facing the adversities of life.

I still have hard days where I struggle to even get out of my bed, or all I can do is think of Damian and the long life we thought we had left. But then I remember my daughters, my mom and my strength. And I’m reminded no matter how dark the path appears to us, with effort and struggle, women become more powerful and independent every day.

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Tomé control de mis finanzas y me dio fuerza durante una pérdida


Contado for Jacquelyne Froeber y Noelys Mendez

El 14 de Agosto es el Día Nacional de la Conciencia Financiera.

Crecí en Cuba, en un hogar cubano tradicional en el campo.

Mi padre era el proveedor de la familia. Trabajaba mucho en una granjita que teníamos y se encargaba de todas nuestras finanzas. Mi madre también trabajaba increíblemente duro para asegurarse de que tuviéramos todo lo que necesitábamos. Ella tomaba el dinero que mi padre le daba y, como por arte de magia, encontraba alimentos, productos de limpieza, ropa, etc., lo cual era un trabajo de tiempo completo considerando dónde vivíamos.

La vida se movía a un ritmo lento en nuestro pequeño pueblo, pero cuando cumplí 19 años, me enamoré y las cosas empezaron a moverse muy rápido. Pasé de la casa de mi familia a la vida de casada y quedé embarazada poco después de la boda. Dos meses después de cumplir 20 años, di a luz a una niña. Me enamoré de ella en cuanto la vi, y supe que haría cualquier cosa para protegerla y hacerla feliz.

Lamentablemente no era feliz en mi matrimonio. Quería mantener vivo el sueño de nuestra familia, pero no éramos el uno para el otro, y nos separamos solo dos años después de casarnos.

Estaba triste, pero en el fondo, sabía que era lo correcto. Sabía que ambos podríamos ser más felices de lo que éramos.

Aun así, me sorprendió lo feliz que realmente podía ser. Conocí al amor de mi vida unos dos años después del divorcio. Tuvimos una conexión instantánea, y supe que él era mi persona.

Damian era guapo, considerado y amable. Lo más importante, trataba a mi hija como si fuera suya.

Nos movimos naturalmente a nuestros roles tradicionales y familiares. Él era el proveedor, y nunca hablábamos de cuentas o finanzas antes o después de casarnos. Pero cuando quedé embarazada, empezamos a hablar de mudarnos a Estados Unidos. Cuba tiene sus limitaciones económicas y queríamos que nuestras niñas tuvieran más oportunidades y libertad para hacer lo que quisieran.

Osleidy y su(s) hija(s) y esposo Damian en Cuba, 2008Osleidy y su(s) hija(s) y esposo Damian en Cuba, 2008

En el 2010, pudimos hacer realidad nuestro sueño y nos mudamos a la Florida. Damian encontró un trabajo de tiempo completo como técnico automotriz, y yo me pude quedar en casa con las niñas.

Damian continuó cuidando de todas las cuentas, la casa y los autos. Todo estaba a su nombre.

Como mi madre, yo hacía todas las compras con el dinero que él me daba. Cuando usaba una tarjeta de crédito, él pagaba la factura.

El dinero no era escaso pero nunca lo di por sentado. Damian trabajaba mucho, a veces por las noches y los fines de semana. Sentí que mi trabajo era ayudarnos a ahorrar dinero, por lo que encontrar las mejores gangas y ofertas se convirtió en mi superpoder. Nunca quise que pensara que me estaba aprovechando de lo increíblemente duro que trabajaba. Money wasn’t tight but I never took it for granted. Damian worked a lot — sometimes nights and weekends. I felt it was my job to help save us money, so finding the best bargains and deals became my super power. I never wanted him to think I would take advantage of his incredibly hard work.

Tuvimos 12 años increíbles en los Estados Unidos antes de que le diagnosticaron cáncer de hígado en 2022. La noticia fue un shock absoluto. Le dije al médico que debía ser un error. ¡Tenía solomente 41 años! “Demasiado joven para tener cáncer,” insistí. Además, teníamos planes. Teníamos una gran vida. Teníamos dos hermosas niñas, lugares a donde ir y cosas que hacer.

Pero al cáncer no le importó.

La enfermedad fue implacable y cruel. Durante los últimos meses, Damian permaneció en cama en casa, sin poder trabajar. Me convertí en su enfermera a tiempo completo y renuncié a mi trabajo de medio tiempo. Siempre existía la esperanza de que tal vez las cosas cambiaran y se recuperara milagrosamente. Pero eso no sucedió. Y sin ingresos constantes, se nos acabó el dinero rápidamente.

Estaba en modo de cuidadora, así que aparté los problemas financieros que se avecinaban. Entonces, un día, de la nada, me di cuenta. Damian no iba a mejorar. Ahora todo dependía de mí. Mi madre y mi hija menor vivían con nosotros. Yo era responsable de mantener un techo sobre nuestras cabezas. ¿Cómo rayos iba a lograr eso?

Una ola de pánico recorrió mi cuerpo y jadeé para tomar aire. Era demasiado. “No puedo hacer esto,” susurré en voz alta. Estaba de luto. Estaba agotada. No tenía la fuerza para seguir adelante. Ni siquiera sabía por dónde empezar.

Pero sabía a quién preguntar. Mi hija mayor tenía 25 años, y aunque está casada, está en un matrimonio igualitario donde ella y su esposo dividen las cuentas y la propiedad.

No quería decirle que necesitaba ayuda, pero no tenía otra opción. Tenía que dar un paso al frente y aprender a hacer las cosas por mí misma. Por nuestra familia.

Osleidy with her mother and two daughters, 2024 Osleidy con su madre y dos hijas, 2024

Con la ayuda de mi hija, hicimos un plan. Lo primero que hice fue reunir todas las cuentas y una libreta. Sumé todos los gastos para ver cuánto dinero salía por mes. Transferí todas las cuentas a mi nombre y las tarjetas de crédito. También tuve que cambiar mi estilo de vida. Ya que mi esposo tenía un buen trabajo, tenía que ser realista de que cuando consiguiera un trabajo, no iba a ganar tanto dinero como él (pero ojalá algún día).

Después de que Damian falleció, me tomé un breve tiempo para estar de luto y luego comencé a trabajar a tiempo completo en una fábrica de ensamblaje de piezas. Hubo momentos en los que pensé que no podría hacerlo. Tenía 45 años entrando al mundo laboral en una nueva carrera, pero estoy muy orgullosa de mí misma y de la fuerza que tenemos las mujeres, de nuestra capacidad para reinventarnos por nuestra familia después de enfrentar las adversidades de la vida.

Todavía tengo días difíciles en los que me cuesta incluso levantarme de la cama, y todo lo que puedo hacer es pensar en Damian y en la larga vida que creíamos que teníamos por delante. Pero luego recuerdo a mis hijas, a mi mamá y a mi fuerza. Y me recuerda que, sin importar cuán oscuro parezca el camino, con esfuerzo y lucha, las mujeres se vuelven más poderosas e independientes cada día.

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Nuestras historias son experiencias auténticas de mujeres reales. HealthyWomen no avala los puntos de vista, opiniones y experiencias expresadas en estas historias y no necesariamente reflejan las políticas o posiciones oficiales de HealthyWomen.



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