patient voices

My Legacy, My Cervivor Footprint…In my Community

Cervivor is committed to closing the disparity gaps that have plagued communities of color for decades. In an effort to close those gaps, Cervivor invited cervical cancer patients and survivors from around the United States to participate in the Cervical Cancer Patient Advocacy Retreat for Communities of Color in our nation’s capitol, Washington D.C.

Why is this so important to our mission?
Research shows that while the rate of cervical cancer has been declining for decades in the U.S., health disparities persist. Hispanic women have the highest incidence rate of cervical cancer, followed by non-Hispanic Black women. Additionally, Black women are more likely to die from the disease than women of any other race or ethnicity. 

So, what is the consistent theme with these health disparities?
The consistent theme for these health disparities are health literacy and trust within the communities of color. As we navigated these themes, Cervivor ensured that each attendee:

  • Had a safe place to share their struggles, hurdles, and concerns in reference to their community and cervical cancer.
  • Was provided with information concerning cervical cancer, treatments, and screening. 
  • Understood their role as a trustworthy change agent in their community.
  • Embraced the opportunity to learn from various speakers and their fellow survivors about how they could utilize their voices to end cervical cancer in their community.
  • Developed a strategic plan to impact their communities specifically.
  • Made a commitment to assist in closing the cervical cancer disparity gap in their community.

It’s imperative that those impacted by cervical cancer have the knowledge and empowerment to lead the charge in changing the narrative for communities of color. Read the personal testimonies from a few of the attendees and the progress they have made since the retreat below.

Gwendolyn shares her thoughts on what this retreat meant to her:

“The Community of Color Retreat had great impact on my life and I have not been the same since. The moment I arrived at the retreat, I noticed everything was planned with so much love and hope, and personalized for us as a collective but also individually as well. We cried, we laughed, we learned, we inspired each other, we listened, and we gained confidence and much knowledge to not only advocate for ourselves but for others as well – within our families, jobs, and communities.“

Since the retreat, Gwendolyn has been instrumental in planning the National Patient Advocacy Awareness Day event with other Houston Cervivors and in co-leading an upcoming health fair for cervical cancer awareness.

Rosalinda shares her insights:

“For many of us, conversations easily continued into dinner, late evening, and early morning coffee meet-ups! We were clearly vibing and opening up to be vulnerable, witnessing and holding space for each other. Native American, African American, Asian, and Latina cervical cancer survivor’s coming together to listen, share, teach, and support each other was a powerful experience! My heart is filled with gratitude for how effortlessly this all unfolded. My most precious take away? Tamika’s loving challenge that following the retreat we step up and use our talents, abilities, gifts, unique perspectives to Do Something small or big, to end cervical cancer.“

After her retreat experience, Rosalinda has jumped in on National Patient Advocacy Day planning, joined as a Cervivor Español Outreach Committee Member, and continues to set goals for reaching low-income populations to ensure they have access to education, screening, and cancer prevention resources.

Janice gave us her thoughts too:

“Hope – grounds for believing that something good will happen. This retreat provided a breadth of information about studies on cervical cancer, as well as how to raise awareness in our communities. Discussing the health disparities across the nation opened my eyes that more needs to be done and that we need to be able to have open, sometimes uncomfortable dialogue to inform others so that they do not have to go through the same things that we did.”

Following the retreat, Janice has been spreading awareness about HPV and cervical cancer through various tabling events at her local college campus and by helping Cervivor raise funds during an early 2023 Kendra Scott Gives Back event.

Although the retreat has ended, the work does not stop. Each attendee made the commitment as a Cervivor Patient Advocate to assist in closing the cervical cancer disparity gap; by creating a culture of diversity, equity, and inclusion which includes supporting, educating, and motivating their communities that have been affected by cervical cancer.

It’s a great reminder that each day we all have an opportunity to provoke change by elevating our voices. We hold the power to save lives for generations to come. Help us continue to shine a light on these disparities by sharing our content with your networks.

Cervivor, as an organization, authentically embraces diversity, equity, and inclusion across all aspects, ensuring that individuals from various backgrounds feel valued, respected, and represented. The organization recognizes that diversity encompasses a wide range of identities and experiences, including persons with disabilities, religious or ethnic minorities, people of color, native/Indigenous peoples, women, gender identity, and sexual orientation.

Interested in learning more about future Cervical Cancer Patient Advocacy Retreats for Communities of Color? Connect with us at [email protected]!

A Turn of Events

Gilma Pereda, Cervical Cancer Patient

“You have a metastasis.”

These are the words that every cancer survivor fears – not only because they mean the cancer is back, but because it has spread to other parts of the body, which has the potential to make treatment a highly complex endeavor.

I was a couple of months shy of the 5-year mark of living cancer free when I received the scary news. And because life is funny that way, it happened right on Halloween, my favorite holiday. Since I received instructions to go to the hospital immediately for an emergency neck neurosurgery, I donned a realistic “ER Patient” costume that day, a neck brace and all.

How did I get there, you might ask? I went to all my 3-month, 6-month, and 12-month checkups. I followed all the post-treatment instructions carefully, from quitting alcohol and sugar to using the dilator mostly every night. I exercised regularly and practiced meditation. My last pap in October 2020 was clear.

It all started with acute pain in my right shoulder, which I thought was work-related tendinitis (I’m a graphic designer, and I use a graphic tablet daily). The pain traveled to my back, neck, and left shoulder – it felt like my joints were on fire. I started having high fevers and chills and woke up every night drenched in sweat.

I went to see my primary doctor, who diagnosed pneumonia. I finished the 10-day antibiotic treatment, but the pain continued. He then ordered special labs and scans. The inflammation markers were up high, and the scans revealed a large mass in the right lung. A more specialized CT scan showed many lytic lesions (bone cancer) all over my body, the more significant ones in a couple of cervicals, right next to the spinal cord. The delicate nature of those lesions was what prompted the surgery.

A lot happened after my Halloween adventure: I had a lung biopsy, a blood transfusion (due to dangerously low hemoglobin levels), and a few nightly trips to the ER that introduced me to opioids and the glory of morphine shots. But that way of dealing with physical pain destroyed my gastrointestinal system, so I ended up in the hospital for what felt like an eternity. Once there, I was on suicidal watch for a few days. But after my first chemo treatment, my oncologist was hopeful – my age qualified me to get a new treatment after chemo. Moreover, there was a good possibility that I could get into remission in a couple of years.

The doctors sent the lung biopsy to quite a few places for research. The results indicated it was cervical cancer. Again. I must confess I found it amusing that I had cervical cancer in my cervicals.

The journey has not been easy. The first thing I did when I was able to get out of my head was to contact a few of my Cervivor sisters. I’ve received greeting cards, care packages, soft hoodies and beanies that I wear all the time (Monterey is chilly!), and loving support, even from sisters who don’t even know me! I’m forever grateful to this wonderful community of strong women who encourage me to keep going.

I’m not officially cancer free yet, but I no longer experience the excruciating pain that comes with bone cancer. After eight rounds of chemo, most of my lesions are getting healed, and the lung tumor is shrinking significantly. As a result, I went from being bedridden to walking with a cane to going on light hikes and walks. I love my new eyelashes, eyebrows, and pixie haircut. In addition, I’m receiving immunotherapy every three weeks, so I now have the energy to go back to school, keep up with my work as a freelance designer, and enjoy quality time with my family and friends.

As October is officially here, I’m starting to plan my Halloween costume. This year I refuse to wear a scary one – I want something inspiring and hopeful. Maybe I could be a “Cervivor Advocate.” It’s payback time.

Gilma Pereda is a metastatic and recurrent cervical cancer patient located in sunny California. She is a graphic designer and translator who wants to lend her skills to a good cause – an effort to educate women and men about HPV and what they can do to prevent it, to promote vaccines for children, and to motivate women that are living with cancer today to feel empowered.