patient voices

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.

Patient Advocates Matter

My cervical cancer story began when I was 24 years old. I had graduated from a local dental assisting program and worked in the field for only a couple of years when I was diagnosed on World Cancer Day 2015. I was completely devastated that cancer was happening to me! I mean, I knew I had a cervix but I was naive to the fact that I could get cancer “there.” And wasn’t it most common for older people, not younger people, to get sick? That’s when I realized how gravely wrong I was. Didn’t I just witness a high school friend succumb to cancer just a year before? She passed away at the young age of 27 and I truly thought that was going to be my destiny. I didn’t know anyone else my age that was going through it.

All throughout my treatment, I placed blame on myself for getting cancer, and even though I felt that deeply, I knew I wanted to do something more to help others. I wanted them to know about cervical cancer and how Planned Parenthood saved my life with their preventive screening services. I wasn’t sure how to start advocating or sharing my story, so I started spreading awareness by handing out little ribbons I made. (Some of my friends still wear them to this day).

If you would have told me back then I would become an award-winning patient advocate, I never would have believed you. You see, I’ve suffered from social anxiety throughout my entire childhood and adult life. It wasn’t until I was finished with cancer treatment that I found out about Cervivor, signed up for Cervivor School, and grew into the patient advocate I am now.

I have been involved with the organization since 2017 and have been presented with some pretty incredible opportunities – including employment by the organization. I started in 2021 when everything had been pretty virtual but this year, in-person events have started happening more frequently. Team Cervivor, consisting of Cervivor Founder, Tamika Felder, and myself, made the decision to attend the annual meeting of the American Society of Clinical Oncology (aka ASCO). As a first-time attendee, I can say I was completely blown away! This event was massive and full of oncology’s leading cancer researchers, clinicians, thought leaders, industry partners, advocates, and so much more!

We kicked off the week-long conference with a breakfast meeting in which we were able to connect with so many people – putting names to faces that we’ve been working with via Zoom meetings and emails for the last few years. We had a constant line of people waiting to talk with us about our work and hear our stories. It could have been the lack of caffeine but it really didn’t hit me until midway through that breakfast – the impact of our work as patient advocates is crucial in the oncology world. This made me even more proud to be working for the organization that gave me my voice.

Dr. Martina Murphy was one of these people who expressed just how important our work is including our Comfort Care & Compassion Program. She says, “Cervical cancer is a disease where we need so much more attention and work. The impact of this group is powerful.”

We continued to attend meeting after meeting and heard a consistent message across the board: we are dedicated to putting equitable patient care as our priority. We heard how patient advocate voices have a seat at the table and how we are leading engagement for some important topics across social media platforms. The realization hit me once again: We make a difference every day. Patient advocates matter.

Now, we made sure to celebrate a little while we were in Chicago too. The Sunday of the conference was a day recognized as National Cancer Survivors Day and we had A LOT to celebrate: Tamika was 21 years cancer free and was given the most exceptional gift and I was just days from officially being 6 years cancer free. We made sure to spend time with some friends and partners – both new and old, to eat incredible food, and to take time to unwind.

It has truly been eye-opening and so rewarding to see the kind of impact my story has had in the last several years. It’s been a lot of hard work and it’s taken time to see the results. But I know it’s not just my story in this. It’s the collective of our stories pushing for the same mission: to end cervical cancer once and for all.

Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.