My Cancer Story: From Patient to Advocate

My Cancer Story: From Patient to Advocate

Kimberly Poole photoBy Kimberly Poole

Editor’s Note: This story was told at our Breakfast for Bag It event this year.  You may also watch or share the video.

I want to take you back to September 17th, 2020.

That was the day I had my first breast ultrasound.

I had found a lump in my breast, but at the time, I was breastfeeding. I was young, and I was told that I was too young for breast cancer and that it was most likely a tumor related to breastfeeding.

I was told to come back in six months and that they would do a biopsy then.

So I went home.

And I waited.

But that lump didn’t go away.

I watched it grow. And every single day, I had this physical reminder in my chest that something wasn’t right.

Looking back, I wish I could go back to that first ultrasound and advocate for myself more strongly. I wish I had pushed for the biopsy that day.

On April 8th, 2021, I finally had that biopsy.

And on April 12th, everything changed.

I was diagnosed with stage 3C triple-negative invasive ductal carcinoma, and I also learned that I carried a BRCA1 genetic mutation.

I went from thinking I had a breastfeeding-related tumor to suddenly hearing the word  cancer.

There really isn’t a way to explain what that feels like.

You’re suddenly handed an entirely new vocabulary.

Biopsies. Scans. Ports. Chemotherapy. Genetics. Treatment plans.

And you’re expected to understand all of it while you’re scared out of your mind and in my case raising a family and working full time. 

I started chemotherapy on May 6th, 2021.

I went through four rounds of Adriamycin—what many of us affectionately call the Red Devil—followed by Taxol and carboplatin.

My treatment became my calendar.

Appointments became my schedule.

Medications became my routine.

And somewhere in the middle of all of that, I was given a Bag It Bag.

And that bag became so much more than a bag.

The binder inside became my document collector, my day planner, and honestly, my best friend.

It gave me somewhere to put all of the paperwork that seemed to multiply overnight.

My test results.

My questions.

My appointments.

My medications.

All of the things that I suddenly had to keep track of when my brain was already overwhelmed.

But more importantly, Bag It gave me something I desperately needed at that point in my life:

A little bit of control.

Cancer can make you feel like everything is happening to you.

Bag It helped me feel like I could participate in what was happening with me.

It gave me tools to become more informed, to organize my care, to ask questions, and to advocate for myself.

And I can tell you firsthand—that matters.

Because cancer doesn’t just happen to your body.

It happens to your entire life.

It affects your family, your work, your relationships, your mental health, and your sense of who you are.

And suddenly, you have to become an advocate for yourself while you’re also trying to figure out how to survive.

I finished my IV chemotherapy in September of 2021.

In November, I had my double mastectomy, along with reconstruction and the removal of my tubes and ovaries.

And in December, I started Lynparza.

Two pills, twice a day, for an entire year.

1,460 pills.

And one day at a time, I kept moving forward.

But something else happened during this experience.

I found my voice.

I started talking about my cancer.

I started sharing my experience.

And I started advocating—not just for myself, but for other people who might find themselves sitting in that same terrifying place I had once been sitting.

Through that advocacy, Bag It gave me another incredible opportunity.

I had the honor of participating in Escape to THRIVE—a wonderful advocacy conference hosted by Bag It that focuses entirely on empowering advocates and helping us bring our best selves forward.

 That experience helped me in a completely different way.

The Bag It Bag helped me learn how to navigate cancer as a patient.

Escape to THRIVE helped me learn how to navigate it as an advocate.

It gave me an opportunity to connect with other advocates, learn how to care for myself, and understand that being an advocate doesn’t mean you have to pour every ounce of yourself into helping everyone else.

You have to take care of the person doing the advocating, too.

And for me, Escape to THRIVE helped me develop my voice even more.

It helped me take everything I had experienced—everything that had scared me, frustrated me, and changed me—and turn it into something that could hopefully help somebody else.

And that’s why I’m asking you to consider supporting Bag It today.

Because I know firsthand what their support can mean to someone who has just heard the words:

“You have cancer.”

That bag may look like a simple binder and bag from the outside.

But to me, it became so much more.

There are people being diagnosed with cancer every single day who are going to find themselves exactly where I was scared, overwhelmed, and suddenly responsible for navigating a healthcare system they never expected to have to understand.

Your donation can help put those resources into the hands of someone who needs them at one of the most frightening moments of their life.

It can help give patients the tools to understand their diagnosis, organize their treatment, ask better questions, and find their voice.

And I can tell you from personal experience:

That matters.

So if my story has touched you today, if you believe patients deserve to feel informed and empowered, or if you’ve ever had someone you love face cancer, I hope you’ll consider making a donation to Bag It.

Because you never know whose hands that next Bag It Bag will end up in.

And maybe it will help someone else find their way through the chaos the way it helped me find mine.

Because I can’t change what happened to me.

I can’t go back to September 17th, 2020 and change that first ultrasound.

I can’t erase the year of treatment.

I can’t erase the fear.

But I can decide what I do with that experience.

And if sharing my story makes one person realize that they aren’t too young…

If it makes one person ask another question…

Get a second opinion…

Push for a biopsy…

Or simply feel a little less alone after hearing the words “you have cancer”…

Then everything I’ve been through has a purpose beyond just my own survival.

Because I went from being told that I was too young for cancer…

to being diagnosed with stage 3C cancer.

And that happened in the blink of an eye.

So if there is one thing I hope you remember from my story, it’s this:

Listen to your body.

Trust your gut.

Ask the questions.

And most importantly, advocate for yourself.

Because you know your body better than anyone else.

And sometimes, being your own advocate can quite literally change the course of your story.

Today, I don’t just consider myself someone who survived cancer.

I consider myself someone who found her voice because of it.

And I’m incredibly grateful that Bag It was there to help me find that voice—and to remind me that even in the middle of something terrifying, I didn’t have to navigate it alone.

I’m still here.

And I am incredibly grateful to be. 💗

Social Workers Change the World! 

Social Workers Change the World! 

National Social Work Month graphicMarch is Social Work Month and this year’s theme is Social Work: Compassion + Action. Individuals who enter the social work field don’t do it for the fame or glory, they enter the profession because they care. They care about people, policies, and advocacy. Social Work Month allows us to celebrate these special people who often go unseen but are so vitally important.

You may not realize it but social workers are everywhere! They work in clinical settings, hospitals and medical offices, in schools and community centers, in child protection and legal realms and in public policy spaces. There are over 700,000 social workers in the United States. Despite years of education, training and multiple certifications, social work is also one of the fastest-growing occupations, and these empathic individuals are in high demand.

One branch of social work near and dear to Bag It is medical social work — especially those in the oncology space. Oncology social workers support patients from “you have cancer” into survivorship. They provide assessments, assist with resource navigation, help with life and memory planning, and, most importantly, they offer emotional support. Oncology social workers are there during the hard conversations with providers and remain with you after to offer kindness, empathy and support.  They are the middleman between the medical team and the patient and their family. In a space where everyone else is focused on the cancer, the social worker is focused on YOU — your quality of life, your hopes, dreams, and wishes, and your feelings and opinions.

Social work can be an amazingly rewarding profession. Regardless of the setting they work in, they go in each day knowing their goal is to help others, to improve lives and enhance well-being. Working with diverse populations helps you learn more about the communities we exist in, the varying needs and about yourself. There are endless positives to social work. And, simultaneously, it can be one of the most difficult professions. Social workers see the world at its best and at its worst, they see people at their happiest and their saddest, at the beginning of their lives and at the end. There is heartache and trauma in this work because there are barriers beyond our control. But they return to work, to the front lines of the human experience, day after day.

Here are some additional resources about how Social Workers can help you and your caregiver.

Survivorship: A Personal Story

Survivorship: A Personal Story

In honor of National Cancer Survivors Day on Sunday, June 2nd, Bag It’s own Mikey Shock has shared her personal journey of coming to terms with being a cancer survivor.

Cancer Survivor… Survivorship… They are words that usually make one think of someone who has won the battle with cancer and is in remission. But there is so much more to survivorship than we think. Survivorship begins at the time of diagnosis and continues for the rest of your life, beyond treatment. It refers to the navigation and experience of a cancer diagnosis.

For the longest time during treatment, I felt like I couldn’t use the word survivor because I had not yet beat cancer; I wasn’t in remission yet. But, others told me that I was a cancer survivor. There was so much inner turmoil because how could I have cancer? I honestly thought it was REALLY funny that I had such a diagnosis. I grew up asking my Mom if I would get the cancer she had when I was two, and she would always tell me no because it isn’t genetic. Well… it’s funny because I got the same diagnosis in the same location, and during the same time of year, 19 years later.

Surviving and Thriving CancerCancer was one of the best and worst things that ever happened to me. I am so glad and grateful I had cancer. I learned so much about who I was and what I could do. Even though I know my diagnosis doesn’t define me, I now find myself constantly motivating myself by saying “I beat cancer, this is nothing!” Knowing that there is a possibility you could die because you have a deadly diagnosis changes your perspective on life and the world around you. You see things you never noticed before, you appreciate the world around you and the fresh air in your lungs (especially after you experienced a collapsed lung). My diagnosis changed me for the better.

After months of coughing until I threw up and having my symptoms ignored by my doctor, I finally received a chest x-ray that showed my right lung collapsing and filling with fluid. Further scans at the ER revealed a massive tumor causing this destruction. After a hospital stay, lots of tests, and a month later I found out that it was Hodgkin’s Lymphoma. It was surreal because I grew up with my Mom sharing her experiences battling this diagnosis. I hear the horror she experienced because technology had not yet evolved to what it is today. I underwent 16 chemo treatments for ABVD and 15 rounds of radiation.

It wasn’t until after I was considered in remission that I started to truly process my survivorship. During treatment, I was in survival mode and wasn’t able to consider my feelings and emotions toward it, I had to get through it.

Ultimately what helped me process my survivorship was Bag It Cancer! I had read all of the materials in the binder during treatment, though I wasn’t able to process everything I was reading, I appreciated knowing I had a resource I could go to whenever I needed it. After I started working for Bag It, I began to see what a helpful resource the Bag It Bag could be. I started to attend events on behalf of Bag It where we would have an advocate table. One of my first events was a Survivorship event. I heard stories, participated in small groups, and had several discussions with oncologists and cancer survivors. This is when I started to truly process what I had just gone through!

After my treatments had ended, I became very depressed and I wasn’t sure why. I was honestly sad that I wasn’t in treatment anymore. I can’t explain it. It wasn’t survivor’s guilt, but a sadness that I had finished that journey. It also didn’t help that the cards, constant texts, and support were starting to dwindle because I was “fine” at that point. I just felt lost.

Honestly, coping with the experience of survivorship after treatment was way harder than during treatment. Again, I can’t tell you why, but I think it’s because I wasn’t in survival mode. I was finally given the time and energy to process this traumatic experience.

I also felt (and still sometimes feel) completely invalidated. I feel that when my body hurts, or when I am so tired that I can’t function, or that I get confused and foggy it’s not a valid excuse anymore because I’m not in treatment. Even a year after treatment ended, I still feel these symptoms at full force and feel like I am expected to be at my full capacity even though I can’t. For some, these long-term symptoms last months, years or even for the rest of your life after chemo.

Survivorship to me means that I am someone who has battled and beat cancer, but also continuing the battle for the rest of my life. I was poisoned with some nasty stuff, and I came out stronger. I am proud of my journey. I am a cancer survivor, and each moment is my gift. Stay strong!

LGBTQIA+ At Risk:  Improving Healthcare and Health Outcomes

LGBTQIA+ At Risk: Improving Healthcare and Health Outcomes

June is Pride Month, an opportunity to celebrate and recognize the impact of the lesbian, gay, bisexual, transgender and queer individuals in our communities. However, the LGBTQIA+ community continues to have many struggles, including receiving good healthcare, largely due to past experiences or fear of discrimination of providers.

National Institute on Minority Health and Health Disparities (NIMHD) reports that stigmatization, hate-violence, and discrimination are still major barriers to the health and well-being of LGBTQIA+ individuals.

Additional challenges for LGBTQIA+ individuals include a higher risk of certain conditions, less access to health care and worse health outcomes. These are partially due to a lack of data, lack of knowledge from healthcare providers for these patients and issues related to social determinants of health. According to the National LGBT Cancer Network a cluster of lifestyle factors including drinking alcohol, smoking, being an unhealthy weight, HIV and HPV infections, and not going in for screenings are all risk factors found to increase cancer incidence and late-stage diagnosis in this population.

 

LGBTQIA+ Heart

Here are a few additional facts:

  • 1 million. The number of LGBTQ+ cancer survivors in the country today (National LGBT Cancer Network, 2020)
  • 7 types of cancer disproportionately impact LGBTQ+ people, including anal cancer, breast cancer, cervical cancer, colorectal cancer, lung cancer, prostate cancer, and uterine cancer (Cancer.net)
  • Transgender individuals are significantly less likely to be screened for breast and colorectal cancer compared with cisgender individuals (AACR, 2021)

The American Cancer Society estimates approximately 152,000 new cancer cases and
more than 48,785 cancer deaths among the LGBTQ+ people this year.

LGBTQIA+ flag

LGBTIQIA+ Community Resources

Part of Bag It Cancer’s mission is to provide respected resources to everyone concerned about their health or facing a cancer diagnosis.  Here are a few of the sources we list on our Populations Groups page in our Cancer Resource Center.  These organizations are on the forefront of advocating for and making improvements to healthcare for the entire LGBTIQIA+ community.