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Cervivor School Seattle Reflections

In the heart of the Pacific Northwest, amidst the city landscapes of Seattle, Washington, a group of resilient cervical cancer survivors recently gathered to embark on a patient advocacy journey that transcended the boundaries of a traditional classroom.

Cervivor School, an immersive patient advocacy training program for cervical cancer survivors hosted by Cervivor, Inc. trained 23 new attendees with a deep dive into the psychosocial aspects of cervical cancer and paired it with the latest science to help them understand the scope of the national and global disparities. In this blog post, we will take you on a reflective journey through the empowering experiences, inspiring stories, and invaluable insights gained during the Cervivor School in Seattle:

“I went to Cervivor School, afraid of not belonging, but I returned with a feeling of sorority and acceptance. Cervivor School exceeded my expectations by far. There was an energy and a contagious passion. I felt enlightened and empowered like never before. After hearing the stories of these extraordinary women, it gives me more reasons to do something to end cervical cancer.” – Claudia Perez-Favela, California

“This past weekend was amazing. Cervivor School was so informative. The knowledge gained is beyond words. I felt so empowered being in a room filled with so many powerful women and the love and support given is just fantastic. I felt a sense of belonging from the get go, there was no awkward moments in the room and I loved that. I admired how everything tied in nicely. I applaud Team Cervivor for the work they put into Cervivor School to make it a reality.  Once again, thank you for allowing me to be part of this.” – Nymphia Emmanuel, St. Lucia

“Firstly, I was so privileged and grateful for the opportunity to attend Cervivor School in Seattle Washington. Meeting with other Cervivors, sharing our stories encouraging each other to be empowered, and learning together how we can all make a difference in our society by advocating for others against cervical cancer and HPV. My personal goal is to gain my voice, knowing that I have the power to help eradicate cervical cancer mortality rates. Sharing my story and being a “Pillar” of hope to someone is making a difference.” – Davina Woolward, Guyana

“It was an incredible opportunity to connect with fellow survivors and advocates with whom I have shared journeys and passions. The sense of belonging and support within the Cervivor community is a big extended family and the knowledge and skills I gained during my time there were invaluable. Learning from experts in cervical health and hearing the inspiring stories of resilience from others was not only educational but deeply empowering. It was a reminder that I am part of a strong, compassionate, and dedicated network working together to raise awareness about cervical cancer, and the HPV vaccination and make a positive impact and a change in women’s health. Cervivor School left a permanent mark on me, and I am grateful for the chance to be a part of such an incredible community.” – Julianna Colley, Georgia

Before we shift our focus to celebrating the remarkable individuals who have earned the prestigious title of Cervivor Champion, we want to extend our heartfelt gratitude to the dynamic speakers and passionate advocates who graced our event with their insights and experiences – Thank you to Dr. Linda Eckert of the University of Washington, Dr. Hyo Sook Bae of the National Cancer Institute, Roshanda Pratt of the REP Network, Kiara Long of the American Cancer Society, Dr. Carolyn Kay of Roche Diagnostics, Dr. Sarah Villarreal of the University of Washington, Dr. Leeya Pinder of the University of Cincinnati, Christina Turpin of the National HPV Vaccination Roundtable, Dr. Yolanda Evans of Seattle Children’s Hospital, Kate Weissman, Cervivor Ambassador, and the incredible team at Cervivor for the impactful conversations and necessary information to become well-informed patient advocates. A special thank you also goes out to Mike Hill and Sue Collins of Moonshine Agency for selecting Cervivor School as an exclusive film screening for Conquering Cancer in the United States.

Next, we extend our warmest congratulations to the exceptional individuals who have been named as the newest Cervivor Champion award recipients. Your dedication, resilience, and unwavering commitment to the fight against cervical cancer have not only transformed your own lives but have also left an indelible mark on our community.

As Cervivor Champions, you embody the spirit of advocacy, turning your personal journeys into powerful forces for change. Your voices and stories inspire, educate, and empower others to take control of their health and join in the mission to end cervical cancer. We celebrate your achievements, and we look forward to witnessing the positive impact you will continue to make in the world of cervical cancer advocacy.

Congratulations to Anna Ogo, Anne Zajic, Cindy Trice, Josyln Paguio, and Kadiana Vegee!

In our relentless pursuit to end cervical cancer, the voices of patient advocates are not just valuable; they are absolutely necessary. Patient advocates are the heart and soul of our movement, the driving force behind the progress we’ve made, and the torchbearers of hope for a future free from this devastating disease. Their lived experiences, their determination, and their unwavering commitment serve as inspiration and hope for individuals facing a cervical cancer diagnosis, and as a powerful catalyst for change within healthcare and policy systems.

Patient advocate voices remind us that behind every statistic is a human life, and that the fight against cervical cancer is not just a medical journey, but a deeply emotional taxing one. As we move forward, let us continue to amplify these voices, to listen, to learn, and to stand together in the unshakable belief that one day we can, and will, bring an end to cervical cancer.

Together, we are a force to be reckoned with, and with each voice that joins our mission, we come one step closer to a world where cervical cancer is but a distant memory.

Lastly, Cervivor, Inc. would like to thank our generous sponsors for supporting our mission of educating and empowering individuals impacted by cervical cancer to take action and create change in their local communities and beyond. Thank you, Hologic, Seagen, Genmab, and Genentech.

My Story as a Traditional Asian Daughter

Both my parents immigrated from Thailand at a young age; met, fell in love, and had me. My grandmother and aunt moved from Thailand to Southern California, a completely foreign land, to help raise me while my parents strived to obtain their American Dream. Even though I was an American kid who listened to News Kids on the Block on the radio, I was still a traditional Asian daughter removing my shoes before entering my home and eating delicious home-cooked Chinese meals. Not only was I physically raised in the Asian culture, but I also absorbed all the traditional Asian characteristics as well.

I was taught to follow strict directions, strive for perfection, and above all conceal my emotions. When you are fortunate enough to be born with the “crying mole”, a beauty mark beneath my right eye, you are taught always to withhold your emotions and tears.  No matter how large the cut, or how much disappointment I felt for failing a test I was taught not to display any emotion. I know this might sound like a harsh way to raise a child, but crying and showing emotion was a sign of weakness in my family. My family wanted me to grow up to be a strong, independent woman while honoring my heritage and culture. 

My strength was first tested when I was diagnosed with HPV at 18. I was a confused hormonal teenager and couldn’t comprehend what was happening. My world was turned upside down and the worse part was I was alone. I couldn’t tell my parents for fear that I would disappoint them. I couldn’t call my friends because I didn’t know what to say. I sat in my truck alone, with the phone in my hand, listening to the dial tone and suddenly tears came gushing out. But somehow, the memory of when I fell off my bike and the sound of my aunt’s voice telling me, “You can choose to sit here and cry or you can clean yourself off and do something about it.” I chose to do something. I quickly started to research HPV at the university library. I needed to understand what was IN me, how did I get it and what could I do about it. I was shocked to learn what my doctor told me was a “minor instance” of HPV could be linked to cervical cancer. I immediately called my doctor and started the process of advocating for myself. I called and called until I got a second opinion from another OBGYN who confirmed that I had cervical dysplasia (CIN III). 

Life seemed to continue for me. I fell in love, graduated with a degree in English Literature, and got in engaged. A few weeks before walking down the aisle I received a call from my OBGYN that tested my strength yet again. My stubborn HPV decided to come back to life and I was diagnosed with 1A1 cervical cancer. In her calming voice, she said “You’re going to be ok. You did everything right, and we caught this very early.” I cried and through my tears explained that I was getting married in a few weeks. I remember the long pause in her voice as she took a deep breath and said “This is not going to take away your happiness, you go walk down that aisle and get married. Go on your honeymoon, and when you get back, we’re going to take care of you. Don’t let this stop you from living your life.” I got off the phone and cried as my fiancé held me until I fell asleep. I followed my doctor’s orders, hid the pain and fears, and got married on August 19th, 2006. And she was right, it was one of the happiest days of my life. 

I truly thought that I overcame the biggest obstacle in my life, surviving cancer, but I was wrong. My husband and I tried for years to have a child. We suffered miscarriages after miscarriages and failed infertility treatments. It was painful every time we got a pregnancy announcement from friends and family. I remember hiding my pain as I congratulated all my friends when I held their newborn children. I wanted a family of my own, but because of the various surgical procedures due to the HPV and cervical cancer, it was difficult. Finally, after years of trying we found out that we were pregnant. I was overjoyed! I knew from the start that even though I got pregnant carrying my baby to full-term was the ultimate battle.

At the start of the second trimester, my cervix (which was nearly gone) was “shrinking” and I was rushed into surgery to insert a cerclage to help keep my cervix closed. I was terrified. I could lose the baby I had wanted for so long. After the surgery, I was placed on modified bed rest, which consisted of coming downstairs once a day, only getting up to go to the bathroom and get food, but mainly off my feet. I told the doctor I would do whatever it took to keep my baby safe. I was hopeful that by restricting my movement for the second trimester I would be rewarded with the freedom in the third trimester.

Unfortunately, that was not the case. At the start of the third trimester, I was placed on full bed rest, only allowed to get up to go to the bathroom and shower once a day, and back to laying down on the bed. For two months I laid on my bed, holding back all the emotions I was feeling, in fear that I would lose the only strength I had left to keep my daughter safe. Finally, at the 30th week, the doctors felt that it was safe to remove the cerclage and release me from bed rest. I was FREE! I could finally see and feel my toes, I could feel the sunlight on my face and see the world again. But the best news, my daughter was safe. My daughter, Samantha Reagan Paguio was born on January 15th, 2013 in style, three days after her due date. 

I know my upbringing to some, might seem cold, restrictive, and harsh, but I am thankful for the matriarchs in my family: my mom, my Ama (grandmother), and my aunt. Their wisdom and traditional ways taught me how to harness my strength when I desperately needed it. Without them and their lessons, I would not be who I am today: a book editor, a mom, a friend, a wife, a daughter, and a Cervivor.

Joslyn Paguio graduated from the University of California, Riverside with a BA in Literature. She is currently a Senior Acquisitions Editor at Elsevier, overseeing the Neuroscience and Psychology book list. Since being diagnosed at 18 with HPV and then cervical cancer, with multiple recurrences, she has dedicated herself to educating others and advocating for the HPV vaccine. She is currently hosting a monthly podcast for Cervivor, interviewing cervical cancer patients and survivors, and addressing issues they face. During her spare time, she enjoys reading, cooking, and traveling with her family.