It seems so surreal to be celebrating another work anniversary with Cervivor. Another year of incredible awareness initiatives, advocacy, education, and outreach plus community support for cervical cancer and HPV-related cancer patients, survivors, and thrivers. If you’re new here, please take a moment and read my introductory blog “Hi, I’m Morgan!” and my “One Year At Cervivor Taught Me” reflection post to bring you up to speed.
I started my cancer journey at 24 years old at a time when I was just getting my footing in my adult life, in my career as a dental assistant, and setting myself up for a bright future ahead. But life has a funny way of placing a wrench right in the middle of those plans we all carefully curate. I wouldn’t face just one cervical cancer diagnosis, but I would be thrown into the arena once again to face a metastatic recurrence in my lungs. I spent the greater part of two years just trying to survive. It was a grave reminder of how truly precious our time is here.
I’m now standing 8 years out from that initial diagnosis with 7 of them being declared with no evidence of disease. I’ve been reflecting on everything I’ve been through and what I’ve been able to accomplish since then: the end of treatment, starting a Bachelor’s program just two weeks after completing chemotherapy; volunteering as a Cervivor Ambassador and patient advocate for so many organizations in my home state and beyond; all the way to getting my own apartment again, graduating with a Master’s degree, and landing a position with the organization that strengthened my voice.
Over the course of the last two years, I’ve been learning and defining my role as the Community Engagement Liaison, as a nonprofit professional, and as a patient advocate. It has been a whirlwind of emotions supporting our community, from celebration to the unexpected and inevitable hits – you know, the bad follow-up scans, unexpected treatment side effects, recurrences, and unbearable losses. Cervical cancer is not an easy cancer. There are all of these additional layers of trauma thrown into the mix and it can be hard to articulate everything to those who haven’t set foot in our shoes. But we try. It’s not until we’ve met someone who has been through it and can say, “I have been there,” and “You’ve got this!” that you truly feel heard, accepted, and safe. I know because it happened that way for me too.
Through it all, we continue to support each other as a community and our mission continues to drive the work we do every single day. Part of that is making sure that no other patient or survivor feels alone like so many of us have. I am reminded of the day I was diagnosed with cervical cancer every time a new request comes into our Comfort Care & Compassion program. I replay what I felt and I put that energy into the love, support, and personalization of that package.
I am also reminded of my own diagnosis when another woman posts in our private group to share that her cancer is back. It can be heavy to see that over and over again but it only drives my purpose as a community support even further. It empowers me to be brave for others and do important work by reaching out to those who provide care for our community members. In doing so, I’ve been able to build and nurture partnerships like the one with the University of Alabama Birmingham (UAB) and Dr. Christina Wilson. Together we came up with a sexual health and support bag for those going through internal radiation – a little privacy bag for dilators and a business card linking to our support resources here at Cervivor. To hear the feedback from real patients has been truly empowering that we’re doing something meaningful and impactful through this partnership.
Every time a woman has her ‘ah-ha’ moment through one of our various programming events, it catapults me back to the moment I set foot into a Cervivor School for the very first time. Standing up and speaking at a Cervical Cancer Summit, Cervivor School, or HPV Survivors School, I am in shock and awe that I was in the attendees’ seats only a handful of years ago. It keeps me feeling humble but it’s a great reminder because we are often told just how important our stories are. There is so much truth in that statement because the sharing of our personal stories continues to grow in our outreach across the globe.
2023 is an opportunity to keep learning, growing, and experiencing new things as an individual, community, and organization. One of my favorite parts of this job is getting to know others and their stories – no matter where they’re at in life. To see the uplifting support firsthand from our community members and just how one little “You’ve got this” message isn’t so little at all. Those are the things that drive this community to be who we are today. We are Cervivor.
I cannot wait to see the expansion of Cervivor, Inc.’s mission even more. It is simple yet impactful and effective: We share our stories to create the change we want to see in this world and in this lifetime. We want to see those who are impacted by cervical cancer to feel empowered and supported because no one should have to ever walk this journey alone.
I know I want cervical cancer to be a thing of the past for our upcoming generations and I believe we can do this. I love to get to know others and the work they are doing in the cervical cancer and HPV-related cancer space! Connect with me on LinkedIn or send Team Cervivor an email at email@example.com.
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.
A little background on me. I’m Lindsay and I’m a Jersey Gal, originally born and raised. My three girls and I moved to Richmond, VA, where I met my husband in a Criminal Justice class (and he’s seven years my junior) and together we had a girl and our first and only boy. I am currently working as a One-on-One in Gaston County for the Department of Exceptional Children by way of Support, Inc. and I absolutely LOVE what I do!
Now let me jump into how I got here… a cervical cancer survivor and advocate.
It all started with bleeding. A lot of bleeding.
I have always been a regular period gal, like clockwork every 28 days, something I could count on (except when I was pregnant of course) and something I never worried about. So naturally, I was alarmed when I suddenly started bleeding irregularly. But my normal period soon came.
One day after being intimate with my husband, I started to bleed.. a lot. I didn’t think much of it and I just figured that maybe that month my period decided to stay a little longer. But a few days later, I started to bleed again. Now, I am really alarmed so I went to the ER where they told me they didn’t see anything wrong and it was normal.
The next month the same thing happened. Only this time there were clots and it was random and more frequent, to the point I ended up wearing pads all day every day because I never knew when I was gonna bleed. There were days I would be sitting on the toilet for 45 minutes bleeding.
I went to my general doctor and I also scheduled an appointment with my gynecologist. As I was explaining everything to my doctor, I jokingly asked if I was getting close to menopause. I really thought this was happening because I was turning 45 and thought maybe my period was ending. She told me I wasn’t in menopause range and she tested me for hyperthyroidism which came back positive for Graves Disease.
I was sent to an Endocrinologist and was put on meds for Graves Disease but I was still bleeding. When I finally got to the gynecologist, who was beyond rude, he completely cut me off and was writing me a prescription for birth control pills! I told him I didn’t need to regulate my period and that there obviously something else.
He did an exam and told me that my cervix felt enlarged and abnormal and he was sending me for further scans and the Pap results would take seven days. During this waiting period, I received notifications that my chart had new test results and I saw alarming things like “mass” “HPV” but I hadn’t been contacted by the doctor yet. After a very long two weeks, I finally got back in to see him and he told me the bad news was that it was cervical cancer but the good news was that the Levine Cancer Institute was close and I would be in good hands. He told me to go to the window to make an appointment and he walked out. He didn’t explain my results, nothing. He showed absolutely no compassion and he didn’t even ask if I had any questions.
I got my appointment at the Levine Cancer Institute the very next day, which also happened to be my husband’s birthday. I met my oncologist, Dr. Casablanca and she explained my results to me and told me she wanted to do a biopsy right then and there but when she did, it aggravated the “mass” and that started what would turn into the worst and longest 10 days of my life in the hospital.
It was confirmed that I had Stage II cervical cancer and I was devastated.
The time in the hospital was filled with constant blood transfusions and prodding and pricking for IVs. My arms were bruised from shoulder to wrist. They had to perform so many “packing” procedures (where they put meds on the end of gauze and shove it into your vagina) that I lost count. And eventually had to start my radiation because I wouldn’t stop bleeding.
I was scared and confused and I never had time to fully grasp what was happening to me. Everything happened so fast my head was spinning. However, one thing was very clear, I had a lot to live for and whatever I had to do I was gonna do it.
I pushed everything else to the side and focused on my treatment plan which was five days of radiation a week for five weeks and five weeks of chemo, with five brachytherapy procedures. My mission in life has always been to make a difference. I have done that as a Coach, Mentor, Community Leader, Sorority Leader, and now as a One-on-One. My new mission is to bring awareness to this new world I was thrust into unexpectedly.
I wasn’t educated enough on the HPV vaccine and was against it for my children but with my newfound knowledge, I’m advocating for it, especially for my girls. I also could not crumble or lose my faith because I wanna be here for my children, for my grandchildren and I want to make sure they are here too. I am NOT MY DIAGNOSIS and I plan to be the voice for those that can no longer speak.
This year I held my first Health Fair/Pop Up Shop called “Get in Good With Your Health” to raise cervical health awareness in my community during Cervical Cancer Awareness Month. It was also to highlight other diseases and allow people to be able to take the steps to have a Healthier Mind, Body, and Spirit. The event was held on January 15, 2023, at Holly Oak Park in Shelby, NC. There were local vendors such as Hoppers Soul Food Truck, Carolyn’s Paparazzi, as well as Charlotte Vendors like Sanaa Glam & Wellness and Teal Diva. Several other vendors traveled from Georgia and NJ to be a part of this event. There was information on nutritional health, cancer awareness and prevention, and Lupus awareness. We had a spiritual reader, a Zumba Instructor, and a Yoga Instructor too. It was a wellness party!
My husband and I are both passionate about our community and both have up-and-coming businesses and the event was sponsored by Group T.H.E.R.A.P.Y, which is my mentoring group, and Concrete Mentoring Corp which is my husband’s group. It was attended by friends and family who had traveled from various states to show their support for me and my vision, as well as locals in our community. I was pleased with the turnout, especially with it being my first time doing something on this scale.
I had been pretty much in a fog during my treatments and I really hadn’t felt like myself but that weekend, with so much love and support from my family and friends, I felt more like myself and it helped me to be able to push through. Really come out of the fog and focus on not only on healing but on my purpose.
My goal is to raise awareness not only in my community but everywhere. I started here in NC and next year I plan to hold this event in three cities: Richmond, New Jersey and each year add another city until eventually there is one held in all 50 states.
This is now my new mission, to be able to tell my story and educate others where I wasn’t. It is important to be able to show people not to be afraid of the myths or stigmas surrounding this disease and how it is important to be proactive about our health and our bodies. I am NOT MY DIAGNOSIS and when I’m gone my legacy will have told my story and maybe have saved lives.
Linsday Gullatte-Lee is a self-published author, Cervivor community member and passionate advocate for cervical cancer prevention and awareness. She is on a mission to bring her Get Good with Your Health festival to every state. We’re cheering you on, Lindsay!
A Special Q&A with Kimberly Williams and Morgan Newman of Team Cervivor
Tell us about yourself. Why did you go into social work?
Kimberly: “My name is Kimberly Williams. I’m a social services worker from the greater Houston, Texas area with over 20 years of experience in the social services field as a social services worker, mentor, manager, and director emphasizing in the fair treatment, work ethic, and services provided to Individuals with Intellectual Disabilities and Related Conditions. I have a Bachelor’s Degree in Criminal Justice-Law Enforcement, a Master’s Degree of Management, and Master’s Degree of Healthcare Management. Through this experience and work with diverse populations, I work to reduce inequality gaps, ensure fair treatment, and appropriate follow-up and access to care.
Watching my parents throughout my youth I believe helped me settle into a career in social services. Although my father passed away when I was 11 years old, I watched as he was a volunteer for the United Way. I learned the importance of community, volunteering, and people being heard, understood, and helped. My daddy would and did put himself in dangerous situations to help others. My mother instilled in me that no one should be treated differently regardless of their skin color, abilities, etc. Their examples helped frame my desire to give in meaningful ways.”
Morgan: “I’m Morgan Newman and I’m a social worker located in the heart of the Midwest in Des Moines, Iowa! I’m fairly new to the social work field graduating with my Master’s degree in May of 2021 and spent most of my young adult career as a chairside dental assistant and office manager in two offices. Before that, I started working at 14 at a small ice cream shop progressing into daycare, working the front desk at a fitness center, being a barista at a coffee shop, retail, and student services.
I wanted to do something more meaningful in life. I was a dental assistant for only a few years when I knew I didn’t want to be in the field for the rest of my life. After going to therapy for the first time in my life at 23, I found my calling: a way to help others and give back to social issues like mental health. I would say that I’ve always had the urge to do this kind of work from a young age but I wasn’t sure how to articulate it. I never knew what a social worker was until I met one who inspired me to follow my dreams.”
How does the work in this organization fit your professional mission or experience?
Kimberly: “Cervivor fits me personally because I am Cervivor – I’m a cervical cancer survivor and thriver. Professionally I’ve been employed in the social services field for over 20 years working with Individuals with Intellectual Disabilities and Related conditions, their caretakers and service providers. Working in that capacity professionally has shown me how to work with people from all walks of life. Working with Individuals with Intellectual Disabilities teaches you that everyone has a voice, sometimes not audible but necessary, their voice, their thoughts, and their existence matters. I believe the Cervivor organization matches my mission which is to ensure that every voice is heard and understood.”
Morgan: “While I was back in school taking every social work, psychology, and sociology I could, I was diagnosed with cervical cancer my second semester back. My niche changed several times – from mental health to criminal justice and so forth. I knew when I was diagnosed with a metastatic recurrence to my lungs, my calling was going to be something cancer-related. Social work helped me process through the trauma I had experienced – putting words to feelings I didn’t know I was experiencing. It helped me heal and empowered me to be an advocate for others.
My instructor, Dr. Sandra McGee encouraged me to think outside the box because you could do anything as a Master in Social Work. So I dreamed about it and I grew with this Cervivor organization during my Bachelor’s and Master’s program to be where I am today. I am living the Cervivor mission statement of supporting and empowering others impacted by cervical cancer. We do that through our private group, programming, and so much more!”
What is your favorite part about your job?
Kimberly: “Learning from different people, the nuggets that you can receive from people can last you a lifetime.”
Morgan: “I am able to live in my values through the work I do with Cervivor and I get to work with people I admire. Our community works as an amazing team and we continue to empower and support each other through all the tough times but we also know how to celebrate the good times too!”
What do you look forward to seeing in the organization?
Kimberly: “I look forward to the organization expanding our footprint with diverse populations to aid in the mission of eliminating HPV-related cancers and spreading knowledge of these cancers worldwide.”
Morgan: “Witnessing the commitment of other organizations and leading professionals to end cervical cancer and seeing it put into action over the next several years. Ending cervical cancer is something we all want to see in our lifetime.”
This could have been Holly Lawson’s mantra. Once she found Cervivor, she was all in. She gained her advocacy wings and she never stopped soaring to greater heights.
Holly was a life-long teacher, knowing that people thrive when their voices have purpose and when they are armed with knowledge. During her time as Cervivor’s Community Engagement Liaison and co-administrator of Survivor Slimdown, she elevated and supported countless patients and survivors, many who had never met Holly in person but who felt a deep connection to her nonetheless. Holly was magical and her caring heart was open to all. She had a knack for captivating you with her Southern charm but her fierceness and determination was ever-present.
Holly used her Cervivor voice on Capitol Hill to make sure her state legislature heard her story of cervical cancer prevention, she shared the stage with doctors and researchers doing work in the HPV space and she was dedicated to helping others find their #CervivorSpark. Holly never stopped advocating; never stopped sharing all aspects of her cervical cancer life for others to learn from. She showed us what resilience, vulnerability, and bravery was. Holly believed in a collective voice and she believed in the power of the Cervivor community.
Today marks three years without our @CancerWrangler but we are incredibly grateful that she made the Cervivor community her home. Holly led with wit, tenacity, and a whole lot of spunk. Her laugh and sweet southern drawl still remains deeply connected to our memories of her. Holly was a shining example of how powerful moving from a patient-to-survivor-to-Cervivor can be. She was able to utilize her voice to create change and we are better because of her dedication.
We celebrate Holly’s lasting impact by never forgetting the work she, and so many others, have done to help carry Cervivor’s message far and wide. If Holly were here today, she’d be over the moon at how we’ve grown yet always knowing how far we still need to go. Our work continues because her voice, her story, is weaved into everything we do as an organization.
Just like Holly, we do this work to save lives. We do this work because our friends and our sisters, who are no longer able to speak, can STILL BE HEARD. We must never stop advocating for cervical cancer prevention because we do have the power, we are change-agents and we hold far too many stories within us that the world must KNOW.
With Cervivor, Holly lives on.
In Memoriam Holly Latrelle Lawson November 8, 1978 – March 13, 2020
My name is Kimberly Williams, I’m a recurrent cervical cancer survivor and Cervivor Patient Advocate that resides in the great state of Texas! I’m elated to join Team Cervivor as the Chief Diversity Equity and Inclusion (D.E.I.) Officer.
When I was diagnosed with cervical cancer in February 2018, it made me realize that being a mom to my two children, a double Master’s recipient in Management and Healthcare Management, and devoting 20-plus years to social services did not lessen my chance to get this diagnosis. The moment that I found out I had cervical cancer my focus shifted to desiring information concerning this disease that invaded my body.
I was introduced to Cervivor by a Cervivor Ambassador in March 2018 after my radical hysterectomy. During this time I listened, watched, and learned from other Cervivors. I faced a recurrence of cervical cancer in 2019 which led me to advocate even more! I began to share my story with those within my reach (my community, my family, and my friends). That’s when I realized that my story as a Black cervical cancer survivor mattered. There was a diverse population who were not insured or underinsured, and not receiving cervical cancer screenings, but who were listening to my story and taking action. It became a mission for me to help these communities by providing support and knowledge, and also sharing my story.
In 2021, while participating in a Cervivor event, I found my voice and drive even more. I learned how to frame my message for different audiences. This brightened my light to make a difference in the underserved communities by sharing Cervivor’s mission through my story. In January 2022, I was in shock to be given the Cervivor Rising Star award. As I accepted the award I understood there were still grassroots efforts that needed to occur to reach those aforementioned communities.
In January 2022, I participated in the Cervical Cancer Summit powered by Cervivor. During this summit participants were encouraged to join the American Cancer Society Cancer Action Network (ACSCAN) to work to impact our local communities and share our cancer stories. Based on this encouragement, I joined the American Cancer Society Cancer Action Network of Texas as a volunteer, which opened doors for me to share my story during HPV awareness events at underserved elementary schools to parents inquiring about the HPV vaccine. I also was afforded the opportunity to share my story during an HPV Roundtable event hosted by the American Cancer Society. Throughout 2022, I continued to share my story at events because I truly understood that my story mattered.
In the summer of 2022, I was chosen as a patient advocate for NRG Oncology’s Cervix and Vulva committee that reviews concepts for clinical trials, which includes ensuring a diverse population participate in the clinical trials. In September 2022, Cervivor hosted their Cervivor School in Nashville, Tennessee and I was awarded the Cervivor Champion award. What a humbling moment in my cancer journey to be viewed as a “champion”.
As I pondered the word champion I found this definition, “a person who fights or argues for a cause” and I silently agreed. Yes, that’s me. That’s what this community stands for and Cervivor helped me locate that champion inside of me!
This revelation reminded me that this cause is larger than me! No one should die of cervical cancer, however, they still do. Black women are statistically more probable to die from cervical cancer and Hispanic women have the highest rate to develop cervical cancer. I’ve made it my mission to touch all diverse groups, regardless of race, creed, color, or gender to ensure they understand the importance of their gynecological health and cervical cancer screenings.
This community was built and founded by a Black woman that understands the struggles that Cervivor’s diverse community members face. There is a common theme that you may hear from any Cervivor which is “no one fights alone.” As a Black woman that has watched a community of Black women not able to address their gynecological health due to lack of insurance, child care, money, or understanding; I understand that my voice matters and holds weight within diverse populations. I intend to amplify my voice through this position to aid in decreasing the cervical cancer inequality gap that statistics show us. How you may ask? By ensuring that the Cervivor community members and any cervical cancer patient, survivor and/or thriver is supported and armed with knowledge to assist in this effort.
If social media is not your thing, no worries I’ve got you covered! Email me at firstname.lastname@example.org. I would love to connect with you as we work together to end cervical cancer. Don’t be shy, tell me how we can help close this inequality gap. You are a part of the Cervivor footprint, your thoughts, involvement, and voice matter!
When I was diagnosed with cervical cancer, I never imagined the journey would include a new sidekick! I finished stage 3B cervical cancer treatment around August or September of 2018. About three months after treatment, I began to experience trouble going number two. It was the worst feeling ever. The times when I could go, it was excruciating, and with plenty of blood. I started to go number two again, but the weirdest thing happened. It was coming from my vagina. I had developed a fistula due to my radiation treatment.
I went into the hospital immediately and was admitted from December 31, 2018 until January 16th, 2019. During that time, they inserted a nutrition PICC line, checked my stool, inserted a catheter, and prepared me for surgery to remove some of my bowel and colon. My doctor explained that there would be a possibility that I would get a colostomy and he may remove my uterus, but it depended on the damage they saw inside. When I woke up, I was informed that the surgeon had removed my right ovary and fallopian tube, and I had a colostomy bag.
The nurse gave me care instructions and I learned to care for my new sidekick. I went through stages of confusion, anger, fear, and insecurity. After getting used to it, I named it, Sheba, and called her my sidekick. I’m a bit more comfortable with it now, but sometimes I still struggle with public participation because of how active it is.
I’ve been diagnosed with body dysmorphic disorder since receiving it because of my constant worry about how I look with a shirt bulge or certain things that I now become obsessed with. Although I’ve gone through these struggles, I’ve learned to appreciate having my colostomy bag, as it has saved my life. I feel better knowing I can use the bathroom without getting infected or hurting myself even further.
I get better each day as I learn and grow. I am living and taking it one day at a time, as I make new goals and step out of my comfort zone. I wouldn’t have it any other way. I am a CERVIVOR!
Kyana Johnson resides in Orangeburg, South Carolina. She is a stage IIIB cervical cancer Cervivor, colostomate, and Marriage and Family Therapy student. Cervivor has always been Kyana’s safe space, information hub, and a great place to come together for a cause greater than us. Cervivor is her inspiration for her advocacy efforts.
As we wrapped up the last weekend of Cervical Cancer Awareness Month (CCAM), we headed to New York for a monumental event that started off this year’s Cervical Cancer Summit powered by Cervivor.
Founder Tamika Felder, along with members from the Cervivor community, were invited to ring the closing bell on Nasdaq. Tamika’s call to action to the world, “Join us in this mission because no one should die from cervical cancer.” And the world is listening!
We kicked off the 2023 Cervical Cancer Summit in partnership with Jacobs Technion-Cornell Institute, it was truly an inspired and innovated conversation with Eve McDavid, a cervical cancer survivor and Fem Tech entrepreneur, along with the brilliant Dr. Onyinye Balogun and Fernando Gomez-Baquero. By using the patient voice, they are developing a revolutionary new device that will transform Brachytherapy, which still uses the same barbaric process that was developed in the 1970’s, with no regard for the actual female anatomy. We are excited to see more innovations like this happening in treatment altogether!
We continued with the patient voice perspective with members of the Cervivor community speaking on the Power in Patient Voices with Arlene Simpson, Yvette Torres, Kadiana Vegee and Kate Weissman. They shared how the collective Cervivor voice can bring more visibility and influence change, working towards our common goal of ending cervical cancer.
Dr. Rebecca Perkins joined us for Expert Hour on all things cervical cancer and HPV. You can tell that Dr. Perkins is very passionate about educating others to understand the importance of HPV vaccination and cancer prevention. “HPV vaccination is cancer prevention!”
The day continued with a session on Emotional Resilience: Survivorship & Support. Community members Anna Ogo, Tina Vetreno and Tiera Wade joined presenter Danielle Modlo, who is a Certified Nurse Practitioner at Cleveland Clinic, really brought to the surface what cervical cancer patients and survivors face from a mental health and wellness perspective during and after treatment.
Joslyn Paguio, Cervivor Podcast host, lead a conversation on Sexual Health with Dr. Rosemary Basson on how we navigate our ‘new groove’ through our physical and emotional changes that cancer brings to our sexual desires.
Just as the day began, we ended with an exhilarating bang as Dr. Cindy Trice shared her personal cervical cancer journey and how years later that journey helped create and fuel KickIt Pajamas. She truly turned her pain into purpose and we just love her company’s mantra, “Friends don’t let friends have hospital butt.” Her inspirational talk left us laughing and crying.
Last but not least, we celebrated five new Cervivor Champion Award recipients for going above and beyond with the mission of Cervivor being their driving force. Join us in congratulating these outstanding individuals as our 2023 Cervivor Champions!
When I was asked to write a blog for Cervical Cancer Awareness Month I happily accepted, but soon after the irony hit me. Awareness is something I did not have when it came to cervical cancer. Awareness is the single thing that got me into this situation in the hopes that no other woman is punished for their ignorance as I have been.
About 15 years ago when I was 21 years old, working two jobs and going to college full time, I had a pap test. I didn’t have it because I was being responsible for my health or anything like that, I had it because the only way to get birth control was to do an annual pap and I wasn’t ready to be a parent. I could barely care for myself. It came back irregular, and I was told they’d need to do a minor procedure called a colposcopy to make sure everything was okay. The “minor” procedure was where an OBGYN goes in to clip a piece of your cervix off to biopsy. It definitely didn’t feel minor, and the memory burned into my brain forever as a “never want to experience that again” item along with wrecking my car and eating mayonnaise.
Fast forward to three years ago and I had just moved to Spokane. I had decided to get a new birth control, so I went and found a new OBGYN (would there even be women’s health if we weren’t always concerned about being pregnant?). Five minutes into the appointment and I didn’t love the guy, which is saying a lot because it doesn’t take very much for me to love you. He was cold, direct, and impersonal. I get it, as a doctor you have to have a little bit of that in the field, but this individual was just not my cup of coffee (NOTE: I substituted coffee for tea here because I think all tea is dirt water). He told me I needed to have that horrible procedure again as a “precaution” because I had a strange-looking spot or two. Really, I wasn’t informed of how serious that could be, or what the spot meant, or anything. Now, I’m not saying it was his fault that I didn’t return after that day to get another colposcopy, but I do believe if things were explained a little more clearly, I would’ve returned to get my procedure.
Doing another time jump, I had now avoided having another pap for two years, but hey, surprise, my fertility brought me back into the stirrups (the hospital kind, not the horse kind). My lab results had come back positive for HPV 16. There’s a lot of stigma with HPV and being someone who’s never had any sort of STI, I was horrified. But the truth is about 90% of people have HPV and have no symptoms for their entire lives. The problem with my HPV is the number behind it. That number is known to cause cancer. Finally, my amazing new doctor sat me down and let me know what that meant, and how important getting a colposcopy was. Unfortunately, because I was pregnant with my little miracle, they couldn’t take the actual sample of my cervix, but still wanted to schedule a couple “look and sees”.
When my OBGYN took over the process, she did my first biopsy-less colpo. She even showed me what she saw and pointed to a couple white spots in my cervix that she thought looked suspicious but “definitely weren’t cancer”. Over the next nine months I did those two more times, both of which I had to remind my OBGYN about. Finally, when I was six weeks postpartum of delivering the world’s most majestic little angel baby, I again reminded my OBGYN about getting my colposcopy. It was horrible and I threw up when I got it done.
When I got home that night, lying in bed with my husband and talking about our day, I suddenly got quiet. He asked me what was wrong, and I replied that I knew I had cancer. I was sure of it. Of course, he didn’t believe me. I don’t even think that possibility was in his mind, even when I said it out loud. But something innate confirmed it, as if despite having zero symptoms my body knew there was something inside of me that wasn’t right. Sure enough, one cone and PET scan later it was confirmed, Stage 3 cervical cancer.
In retrospect, I know it’s cliche but “everything really does happen for a reason.” It’s weird to say, but I am glad they didn’t catch my cancer earlier. I am glad because usually, the treatment for stage 1 cervical cancer would be a radical hysterectomy. If my cancer had been caught earlier, I would’ve never had my son. I would endure 1000 cancers for him to be born. That being said, if I would’ve had my procedure done three years before, I would likely have caught all of this before there was cancer. So, really this just boils down to taking responsibility of your own health. No one will do it for you. And just because you “feel” healthy, doesn’t mean there isn’t something lurking inside. If you take away anything from this, take the initiative to get an annual pap, and further, if something is irregular, take the follow-up. Be aware of this extremely horrible but preventable disease.
Jessica lives in Spokane, Washington with her husband, 5-month-old son Kenny and 6-year-old step daughter Kyla as well as their two dogs, Cane Corso Bruce and Boston Terrier Elvis. She works as a large enterprise senior account executive for Gartner. In her spare time, she enjoys snowboarding, wakeboarding, golfing, showing her dogs in conformation, riding her horse and spending time with her wonderful family.
“Your birthday is the beginning of your own personal new year. Your first birthday was a beginning, and each new birthday is a chance to begin again, to start over, to take a new grip on life.” — Wilfred Peterson
Cervivor, Inc. is celebrating eighteen years as the leading voice in cervical cancer patient advocacy. We have been at the forefront of change, of dismantling stigma, and of pushing toward a future free of cervical cancer. Cervivor has also been a place of connection and support for so many affected by cervical cancer. It hasn’t always been so apparent as this community has grown and evolved over time.
When Cervivor founder and chief visionary, Tamika Felder started this organization, it was because she knew there was power in a collective and knowledgeable voice. She knew that others like herself needed a community and a purpose that gave back what cancer tried to strip away. A community that refreshed our strength and resilience skills to overcome the trauma we have experienced. She strategically used the tools she possessed as a lifelong storyteller and compassionate change-maker. Tamika created, as she always says, something she didn’t have as a young adult and cervical cancer survivor.
What started as Tamika & Friends, Inc., supporting cervical cancer survivors and their families, evolved and grew because Tamika knew the future held endless possibilities for empowered and educated patient advocates who wanted to show the world that cervical cancer has a multitude of faces and backgrounds. She knew that by simply sharing our cervical cancer experiences, people would listen and that meant change was possible. We are going to officially put an end to the shame and stigma behind a cervical cancer diagnosis and hopefully one day to the disease itself.
Eighteen years later, Cervivor has a global reach and our partnerships across various health disciplines brings our work of cervical cancer awareness, prevention, and support to even more audiences — policymakers, researchers and medical teams, educators, and even The White House.
Cervivor continues to support newly diagnosed cervical cancer patients, as well as create spaces for those seeking to connect and those wanting to add to our advocacy footprint. We have come so far since the early days of our HPV/House Party of Five but still have more work to do. We have more lives to help save and honor the lives of those who are no longer with us through our work.
We will continue on but we need your support. Please continue to be visible as our supporters, advocacy partners, friends, and family. We cannot do this work alone. Start by donating $18 today in honor of Cervivor’s 18th birthday.
Lastly, let’s sing a happy birthday tune to our beloved organization, because #WeAreCervivor!
Cervivor Spirit Week gives our community a chance to bring some fun to an otherwise serious topic of cervical cancer awareness and prevention. As our Cervical Cancer Awareness Month Committee Co-Chair, Jenn Myers says, “It can be a heavy topic but we are the voices that need to do this work.”
We definitely had a ton of fun with everyone this week as we splashed social media with so much teal & white awareness! We love how many people took notice, shared their stories, and joined in on our cause.
Cervivor Español unofficially kicked off the spirit week with a MeetUp on Saturday then we transitioned into the theme days starting on Sunday! Sports Day Sunday brought out all the sporty-Cervivors representing their favorite teams. Lisa Gopman reminded us to get our cervical cancer screening and vaccinate our kids against HPV all while showing off her Bengal pride.
There were so many great Movie Monday quotes from some classic Hollywood films. Kel Bel spent the weekend watching Harry Potter movies with her daughter while recovering from her hysterectomy and shared this Albus Dumbeldore line that hits her every time, “Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”Mic drop.
Our Cervivor Noir and Cervivor API groups kicked off their inaugural MeetUps to further our commitment to diversity, equity, and inclusion for anyone impacted by cervical cancer. There were stories shared so powerful and we cannot wait to see the work they all do in furthering our mission to end cervical cancer. (If you identify as Black, join Cervivor Noir and if you identify as Asian or Pacific Islander, join Cervivor API).
On Talk to Me Teal & White Tuesday we asked you what Cervivor means to you and here’s what you shared with us.
“Cervivor means no one fights alone.” ~ Christy
“Cervivor means sharing our stories and using our voices to spread awareness and to end cervical cancer and to let other women know they are not alone.” ~ Brooke
You gave us all the cozy vibes on Warm Up Wednesday and Cervivors were sharing pics snuggled under blankets and some with their pets. Joy shared the unconditional love from her cat and Arlene was living the Wonder Woman Snuggie life.
The favorite food of choice on Tasty Thursday seemed to be none other than… tacos! They really are the perfect food! Sharing our tasty treats helped us get ready for Saturday’s amazing session, Cooking with Tracy Citeroni, who demonstrated a versatile, healthy and delicious quinoa ‘risotto’. You can grab the recipe here to cook on your own!
We even kicked off our first-ever Cervivor Book Club meeting by discussing Brene Brown’s Daring Greatly! As we headed into our weekend, we asked you to share your happy places on TGIFriyay. Sand, surf, mountains, lakes, fireside, wilderness trails, and museum strolls hit the top of your lists for joy-inducing places we like to be.
And we ended this year’s spirit week with a favorite, Sock It To Cervical Cancer to bring out your favorite statement socks with a Cervivor flare!
Through this time, we continued to honor the joy and Cervivor spark of our late Cervivor sister, Jodi Madsen. Cervivor Spirit Week was one of her favorite things from last year and she was a master in fun content creation and social media advocacy.
We hope this week has inspired you to continue these ways of advocating throughout the rest of 2023. It is truly incredible to see the power of our community and it’s a great reminder that we are Cervivor and we are unstoppable!
It’s probably time to address the elephant in the room – Stage IV cancer. Words that typically come along with this stage diagnosis are incurable, terminal, and life-threatening. In my case, my cervical cancer has metastasized and spread to my collarbone and armpit area. Compared with many, my Stage IV is ‘minor’ because it is not present in my blood, bones, or brain. BUT it is incurable. The goal is to treat until we reach a point of NED (No Evidence of Disease), a pseudo remission. And for the remainder of my time, I will need to regularly test for recurrence.
So, I’m not going to live forever; who is? And maybe I won’t live as long as I hoped, but there are new advances in treatment daily! I don’t discuss this part of my cancer journey very often because I refuse to give it any credence.
What I find curious is that I didn’t invite that particular elephant into my room. It was placed there by others. I know cancer is an uncomfortable subject for many, but to quote Monty Python, “I’m not dead yet”, so please don’t treat me like I am!
The elephant in my room is a very different beast. Meet Ganesha! Ganesha is a Hindu deity that is known as the remover of obstacles. He is a symbol of prosperity and wealth, and he is believed to bring good luck. This is definitely the elephant I need in my corner; a hopeful, powerful and positive force!
I believe that “the diversity of faith should be appreciated and celebrated.” (Stephen Mattson quote) That’s why I’m so appreciative of any prayers, positive vibes, or good juju sent my way. I’ll take it all and return it tenfold, should you need it! My ultimate goal is an honest relationship with my creator and maybe in my world, gods and elephants occupy the same space!
There are a few more elephants that I choose to have in my space and one of them is my support group. “In the wild, female elephants are known as fierce protectors. And when one of their sisters is suffering, they circle up around her. They close in tight, watch guard, and even kick dust around her to mask her vulnerable scent from predators. And yet, we are the same. This is who we are, and who we are meant to be for each other. Sometimes we’re the ones in the middle. Sometimes we’re the ones kicking up dust with fierce, fierce love. But the circle remains.” – From the Festive Farm Co.
The last elephant in my room is my mom. She was the first lover of elephants I knew (a byproduct of living in Thailand). I fondly remember her collection of elephant figurines, turned towards the window to keep the bad luck at bay. Sadly, she passed from liver cancer ten years ago, but she would have been the first to lead the charge to circle up in support. And her wisdom and strength are ever present in my room (and life), because like elephants, love remembers.
And so, my journey continues. With a lot of faith, hope, love, support, and my elephants, I plan on living every day to the fullest!
Christy K. Chambers is a world-traveling, military brat who moved to the east coast for college and never left. She currently resides in Monroe, North Carolina with her husband, son, and doggo, Ethel Mertz. A Jill-of-all-trades, she has had multiple careers in theatre, stage lighting, commercial printing, retail and paper arts. Christy was diagnosed with Stage IVb cervical cancer in May 2022 after she went for a routine Pap test. She completed round one of treatment in August 2022 and is currently being treated with immunotherapy.
After completing my oncology protocol and hysterectomy for my cervical cancer, I developed a rectovaginal fistula. This meant that due to the radiation I received, my colon and vaginal wall merged. I like to think of it as when you burn two plastic sheets together, they become one. At some point, a tear began to form, and it developed into a fistula.
How did I find out about the fistula? I can’t pinpoint the exact moment, but if I look back, I do remember a very sharp pain after I sneezed about four weeks after my hysterectomy. Later that week I noticed a different color in my urine and some pain each time I went to the bathroom. I called my doctor and he said he would like to check it out. By the time I went I was passing small clots, I was unaware if it was due to the surgery or an infection. When the doctor ran his tests, and the pelvic exam being the most painful one, he confirmed that a fistula had been formed. It was about one centimeter in diameter.
A week after my initial exams, I started passing stool through my vagina. That part of it has been the most horrible part of my life after cervical cancer treatment. I was told to wear diapers during this period, but I didn’t want to, so I started using maxi pads. I would be needing to change them at least 4 times a day. Going to the bathroom was painful and uncomfortable. I was battling pain and infections during the next couple of months until all testing was completed to see the course of action my doctors wanted to take. I started carrying an extra pair of jeans and 2-3 pairs of underwear because of the accidents. Doctors told me not to go to work during this time, but I really didn’t want to stay home. I needed to be doing something to take my mind off it. I made a strategy plan; I parked my car next to the nearest bathroom at my construction site. That way it was easier to get to my emergency bag and I had my brother working close by so I would call him up if I had any accidents that might require extra assistance. I also told two of my male coworkers what was going on with me just in case anything went wrong.
The most traumatic moment for me was when they had to perform the colon enema test on me. I remember I was that table being pumped full with barium and then just noticed my legs getting wet. I began crying and told the doctor that I was peeing myself. He said, it’s okay and they can clean it up. But I couldn’t stop crying and then I started to panic. He put his hand on my head and told me to breathe, he said he knows how painful this is but he needs to find out what is going on. When it was over, there were nurses in the room cleaning me up, that’s when I noticed that the bed and the floor were covered in my feces and barium, that came out of my vagina. To this day, it has been the worst experience I have ever had.
I remember changing in the examination room stall crying, feeling embarrassed, and with the desire to hug my brother who was waiting for me. There have been many beautiful things in my life, but that hug, that hug made me feel so safe. The doctor explained the extent of the damaged I had and that my surgeon would recommend getting a colostomy.
I am grateful for my colostomy, it has made my life less complicated.
Living with a tiny fistula, has changed my life, but has not stopped it. I did try Crossfit for two weeks but had to be checked since I started bleeding a bit, which showed that the fistula had become larger. So, now I stick to low impact activities, like walking and stretching. I have little to no infections and luckily I am off Tramadol and Dexketoprofen, which was the protocol I had for pain management.
My fistula is still here. In my last exam the doctor said it was barely detectable. I am still not sure if it will heal, statistics do not support this idea, so we know that my ostomy is becoming permanent. Which I don’t mind.
Karla Chavez is a Cervivor Ambassador, Cervivor Español Co-Lead and a 2022 Cervivor Champion Award recipient. Karla is a civil engineer in her home country of Honduras and she’s an amigurumi enthusiast.
My doctor called me on November 11, 2020, and told me over the phone that I had cervical cancer, and after I slid down the kitchen counter and physically got up off the floor, I started Googling ‘cervical cancer’. I knew where my cervix was and I knew I had cervical dysplasia in my 20s that had gone without treatment as it disappeared and the next pap was normal. But all of a sudden, I was a cancer patient. I was going to have a radical hysterectomy and bilateral oophorectomy. I was going to be genetically counseled and tested to find out I had a BRCA gene mutation. My body had turned against me. When I learned cervical cancer and HPV were linked, I was convinced I was contaminated and dirty and bad. It was the height of the pandemic and I was alone and scared.
I found Cervivor on YouTube first and watched every video. Later I found Cervivor on Facebook and joined I’m A Cervivor! and introduced myself. Between the website and all the Cervivor stories, I became informed. I understood my options and I understood what my experience might be like. I had this knowledge and a sense of community, and I felt empowered. I was ready to fight cancer because of Cervivor.
The Cervivor community was a lifeline on those nights I was afraid I was dying. It is still a part of my daily life today, after my one-year cancerversary. With Cervivor, we laugh together, we cry together, we learn from each other, we share our stories, we live our lives, we are still living, and we honor those who are no longer with us. Now that I am a survivor of Stage 1A2 cervical cancer, I am helping to support others by offering my shoulder to lean on and sharing advice and experiences with others going through the same diagnosis.
Cervivor is my support and hope. It felt like finding my family because I am an orphan and have no living family. They were at my side in the OR as part of my visualization exercise for a successful surgery. They were there as I dealt with the consequences of my surgery. Suddenly, I had a beautiful diverse rainbow of sisters from all walks of life, and we were all joined by our experiences and making sure that no one else would go through what we had gone through if we could help educate others. I learned something from every single one of them and continue to learn from them at every meetup and through every call and text to a Cervivor sister.
Cervivor has changed my life for the better. Programs from Cervivor comforted me after surgery and inspired me to take control of my body and my health in ways I had never done before. For example, I’ve lost 54 pounds and I’m healthier than the day of my diagnosis. I may not have any female reproductive organs in my body anymore, but I am still a strong bad@&$ babe. I am still fighting and adjusting to my body after cancer treatment, but I am also fighting for others, and I will never give up!
Cervivor taught me that cervical cancer actually gave me a superpower – the power to save lives by educating people on how we can end cervical cancer. Our stories matter. We are personal experts in our stories of cervical cancer and how much it takes from us. Cervivor teaches us to give back by raising our voices. Knowledge is power. The information and resources about HPV and cervical cancer from Cervivor can encourage vaccination and give patients the support they need.
Cervivor prepared me and supported me, and now I am paying it forward in my community and online. For me, “Informed. Empowered. Alive.” is one of my life’s purposes now. Thank you, Cervivor, I love you! Each and every one of us, no matter where we are in the cervical cancer experience – from those who have had dysplasia and an HPV diagnosis to those of us who have metastasized – it is an honor to count myself amongst us. We are empowered! Let’s make cancer pay!
Pixie Bruner lives in the Atlanta metro area and is already a one-year survivor of stage 1a2 cervical cancer. She is a roleplaying game author, poet, historian, and academic guest lecturer on Classical Studies. She is a NASA Night Sky Network award recipient for education. Her hobbies include art, stargazing, dressing like a cat, coloring (including her hair in random crazy colors), and she is a voracious bookworm under five feet tall. Pixie advocates for cervical cancer awareness by sharing Public Cervix Announcements to total strangers. She is currently starting a joint project with other survivors in her area (Teal Sisters of GA) to fight the stigma of HPV, crush the ignorance of cervical cancer and HPV-related health issues, encourage HPV vaccination, and educate on cancer screenings and treatment for everyone.
Each night, I climb into bed, prop up on my red, corduroy reading pillow that has followed me from college all those decades ago and slowly open a small, bound book. Pen in hand, I take a deep breath and begin a scribbled conversation that has kept me sane since my April diagnosis of synchronous cervical and uterine cancers. That book, this pen, those words are my free therapy. And I am better for them.
The magic of words was made plain to me in childhood. I taught myself to type on Mom’s gunmetal gray, Royal Underwood typewriter, pecking away on two fingers to churn out a neighborhood newsletter. Adolescence brought dreams of growing up to study Creative Writing, joining a writers’ colony in the Vermont woods and becoming the next Nikki Giovanni, Alice Walker, Gwendolyn Brooks…you see where this is going? Well, as too often happens, adulthood altered those dreams, and this English Literature major became a government trial lawyer in Massachusetts—still using words to shrewdly sway jurors and to sharply skewer opponents—but I always maintained a growing collection of blank verse, short stories, and other musings that one day could be shared with somebody. Anybody.
Perhaps all that explains why one of the first errands I made immediately after my diagnosis was a search for the right journal to house my feelings—all the scary, happy, and unnamed things that would come my way along this journey. This vessel could not be flimsy or cheesy. No, buddy. This word-keeper had to be worthy of the emotions that would leak out onto its pages. Here is where I would explain how this “cancer thang” discombobulated us all.
I had always proclaimed that I planned to blow out candles at my centennial birthday party. How could the threat of mortality come knocking at my door now, when my married daughter in Mississippi (Lord help us) needed me after giving birth to our first grandchild in March? And my son was 2,000 miles away in the Boston area, having just survived a divorce and a torn Achilles tendon. He had a hard time handling my illness. My husband was trying mightily to cope with his own anxieties about my health and all the myths and stigmas associated with cancer. This was way too much for a cheap, lightweight notebook. Only a special book could cradle those complicated realities.
My chosen, pink pen pal has never failed me. Its sturdy pages have given me space to vent about the things it has been hard to articulate to folks: the chest port that feels reminiscent of alien abduction anecdotes; the tutorial on dilator use that made the nursing assistant blush; the way I could discern the texture of food (even water), yet not its taste; the exhilarating freedom of a shaved head displayed to all the world. And it has let me weep onto its cream-tinted pages, wrinkled testament to the overwhelming sadness that comes with this journey at the oddest times.
This journal is so much more than frequently illegible cursive words. No, these pages are quite often a battle cry, this warrior’s call to arms against the most unexpected enemy: her own cells. These pages are like an old-timey, gutbucket, blues chart from backwoods juke joint—a full-throated, belly-wail of agony and joy, growled by one who knows the score (literally and figuratively) and ain’t afraid to tell you all about it. And, always, always, that hard-cover book is my hymnal, sketching lines of praise to Him in Whose armor I outfit myself every day. This little unassuming book contains uniquely metered lyrics of love and faith and strength.
I will write my way out of this Egypt. The inked lines will chart the path to my Red Sea….
A sixth generation Texan from San Antonio, Doris Helene White earned a B.A. from Central State University in Ohio (an historically black institution) and a juris doctorate from Boston University School of Law. Her career in the government sector as a Massachusetts trial attorney reaffirmed her commitment to an equitable legal system. Retired in 2014, Doris returned home, where she indulged a passion for writing, became an amateur advocate for the history of African Americans in these United States and continued active affiliation with San Antonio Black Lawyers Association, Delta Sigma Theta Sorority, Jack and Jill of America, Bethel African Methodist Episcopal Church and other community organizations. Her husband Steven Soares, daughter Dr. Leigh Soares and son Steven Cooper Soares lead the best “cancer posse” in the galaxy!
“You have cancer.” Three words that no one ever wants to hear, certainly not during pregnancy… and certainly not when the part of your body the cancer has invaded is your cervix.
I will never forget that day. It was August 6, 2020. I was 34 and 20 weeks pregnant with my son, Karson, and those three little words turned my world upside down. As if 2020 hadn’t been tough enough already with suffering a miscarriage and dealing with a global pandemic, I was now living in a whole new nightmare. I had tested positive for HPV-16 and had an abnormal pap with HGSIL (high grade squamous intraepithelial lesions) in February after my miscarriage, but my doctor didn’t talk to me about any treatment at that time. I had put off having a pap, and with the guidelines back then, I was over a year and a half overdue. Two days after my birthday in April, I was surprised to find out that I was pregnant again, just two months after my loss.
I had a pregnancy confirmation appointment in May, but with appointments being pushed back due to COVID, I didn’t have my colposcopy exam until July 2020. My OBGYN reassured me that while she was concerned about what she was seeing during my exam, she didn’t think that it was cancer. I had never had an abnormal pap before and knew plenty of women who had abnormal ones all the time, so I really wasn’t too worried when I was referred to a gynecological oncologist to complete a biopsy at 19 weeks pregnant. When I sat down across from my GYNONC for my results and was told that I had squamous cell carcinoma of the cervix, stage IA1 (later amended to IB1) at 20 weeks pregnant, I felt completely broken. I remember thinking, why was this happening to me? And what had I done to deserve this?
Since I had already suffered a miscarriage earlier in the year, I was less concerned for myself and more terrified of what cancer could mean for my little miracle growing inside me. I knew the stage was early, but I still feared it could be worse than what the biopsy showed and had so many questions and concerns. Could I carry to term? What were my treatment options? What were the risks? Could it wait? Was I going to die and leave my children without a mom? And the biggest concern of all – what about my baby? Would I have to choose between my baby’s life and mine?
The day of my diagnosis was a whirlwind. I was so thankful my husband, Tyson, was allowed to be with me for support. Since it was in the middle of the pandemic, many appointments were restricted to patients only and no visitors. We spent the entire day at the hospital. I was scheduled for my cold knife cone surgery and we went straight from my GYN oncology appointment to do pre-op testing and bloodwork, then to see a high-risk OB. They did an anatomical ultrasound to check on Karson and measured the length of my cervix to see how surgery might affect my pregnancy and ability to carry to term. We were educated on the risk of incompetent cervix and premature delivery, and the possibility of having to have a cerclage if my cervix started opening. I remember leaving that appointment feeling very uneasy about what they might find during my surgery and afraid of the possibility of having to make an impossible choice if my staging ended up being worse than we thought.
We had our gender reveal on August 8, 2020, just two days after I was diagnosed. We really needed some joy, so we decided to have the party as planned. With everything else going on, my husband and I had decided during our anatomy scan that we didn’t want to wait to find out the gender for ourselves, so it was no surprise when my bonus son hit a baseball and it shattered and blue powder flew everywhere. We decided to tell our close friends and family about my diagnosis that day. There were countless hugs and so many tears shed when it should have been a time of celebration. I had my cold knife cone surgery two days later. Due to being pregnant, general anesthesia was too risky, so I had a spinal epidural and stayed awake for my procedure. They checked Karson’s heart tones before and after surgery to make sure he was okay. After my surgery, I felt so anxious when I was still numb and couldn’t feel if he was moving or not, I was so relieved when the epidural wore off and I could feel him again. On August 19, 2020, I saw my GYN oncologist again to receive the pathology results from my surgery. The news was not what we wanted to hear, and my diagnosis was changed to stage IB1, grade 2.
We talked through treatment recommendations from the tumor board, as well as potential risks. I remember her telling us that the surgical margins were clear, but she was concerned that the cancer may have already spread due to being unable to do the proper scans in pregnancy. She explained that I had grade 2 cell changes which grow and spread more rapidly, and that cancer can sometimes progress more quickly with pregnancy and hormonal changes. We were told about possible growth restriction for Karson in utero and the possibility of hearing loss for both of us from the Cisplatin. As terrifying as it was, I decided the potential benefits outweighed the risks and chose to follow the recommendation to do chemo treatments, knowing that I might also need to do radiation after Karson was born.
I remember so many people were shocked that chemotherapy was even an option in pregnancy (it is an option in second and third trimester when the baby is more developed). Cervical cancer diagnosis during pregnancy is rare, with only .5-3% of women being pregnant or postpartum at the time of diagnosis. I was one of less than a handful of women that my team had treated for cervical cancer while pregnant, but I put my full trust in my medical team and in God to see us through it.
I was told that I would need to have a scheduled c-section at 37 weeks to hopefully avoid going into labor on my own, which would include a higher uterine incision to avoid disrupting my cervix and potentially spreading cancer cells. I was also told not to anticipate being able to breastfeed. I had a vaginal delivery with my daughter, Kaydence, and had breastfed her for 18 months, so hearing this was disheartening. I felt very scared, angry, discouraged, and alone. I started searching for cervical cancer support groups on Facebook to try to connect with others who had faced what I was going through. I was lucky to find Amie, another woman who was diagnosed with cervical cancer while pregnant and was going through the same treatment as I was about to be. Through Amie I also found an organization, Hope for Two, that connects women who are pregnant with cancer with other women who have been pregnant with the same type. I sadly didn’t know about Cervivor at the time, but it was reassuring to connect with Amie and my Hope for Two support, Devon. It helped me to recognize that I was not alone, and they gave me the hope that I desperately needed.
I did my first chemo treatment of Cisplatin and Taxol on August 25th, 2020 at 22 weeks pregnant. I asked a lot of questions during my education appointment prior to starting chemo and they were very thorough in explaining everything, but nothing could have prepared me for it. I didn’t expect how tired I would be, or how long treatments would take with the bloodwork, oncology appointment, pre-meds, and then the actual chemo itself. I was one of the first patients there each time and the last one out and slept through most of the treatment.
Two weeks after my first chemo treatment, my hair started falling out. At first it was just a little, then it was handfuls. I had ordered several head scarves as a precaution, but it didn’t prepare me for the heartache of losing my hair. I received a wig from the cancer institute and had a dear friend shave my head for me after my second treatment when my hair was so thin that I couldn’t stand it anymore. I was shocked that I didn’t cry; it was empowering to have control over something when so many things were out of my control. I never in a million years would have imagined having to wear a wig or fake eyelashes for my maternity photos, but with the help of a makeup artist/hairstylist friend I felt so beautiful, and our photographers captured some amazing memories for our family.
I continued chemo treatments every three weeks for a total of four treatments, with my last one completed at 31 weeks pregnant. I was very blessed to have minimal side effects from chemo. Other than fatigue, I had side effects related to the steroids I was taking – trouble sleeping prior to treatments, redness in the face and chest after treatments, increased urination, and heartburn.
During this time, I was also going to routine appointments with my regular OB and to see my high-risk OB every two to three weeks to check on Karson to ensure that the chemo was not stunting his growth or affecting his development. Unfortunately, I added another diagnosis at 28 weeks pregnant – gestational diabetes. Now instead of worrying that Karson would be small from the chemo, we worried that he might be too big from the diabetes, along with some other possible risks. I tried to adjust my diet but the steroids I was given for chemo made it difficult to keep my blood sugar down. I ended up having to check my blood sugar and inject myself with insulin several times a day for the remainder of my pregnancy (NOT a fan).
Despite the many challenges we faced, we found joy and comfort in getting to see our baby boy often with all the ultrasound and biophysical profiles during the second half of my pregnancy. In fact, we had so many done that we have a photo album full of just ultrasound photos of Karson.
I was originally due on Christmas Eve, but my c-section was scheduled on December 8, 2020, at 37 weeks and 5 days. I remember so many emotions that day – happy, scared, nervous, anxious, excited – but I think the strongest one was the feeling of relief. It felt like the light at the end of the tunnel, he was my blessing in the struggle. I will never forget the emotion I felt when the doctor lifted Karson up over the drape and I saw him for the first time, my perfect little 7 lb. 2 oz. miracle. My husband and I both wept with tears of joy that our baby boy came out okay. He was the most beautiful thing I had ever seen. With everything Karson and I went through, I feel like we will always share an indescribable bond. I kept a pregnancy journal to give to him when he is old enough to understand. I can’t wait to tell him about what a tiny warrior he was, even before he was born.
While my doctor was closing me up, my husband ended up going into the other room with Karson and the nurses while they worked on his breathing and cleaned him up. I was not allowed to have a doula or extra support with me, so I laid there alone, scared, and wondering if everything was okay. Unfortunately, Karson had trouble transitioning and had fluid in his lungs, constant grunting, and increased respiration rate.
When I finally got to hold him when we were in the recovery room, I wanted to hold him and never let go. I was determined to breastfeed him for as long as I was medically able, however long that would be (we made to it to two years and are working on weaning now). Karson was ready to nurse right away and latched like a champ. The doctors were still concerned but since a NICU room was not available, Karson was allowed to stay in our room overnight with special monitoring. He was taken to the NICU first thing the next morning and spent a total of 7 days there due to issues with his breathing and heart rate.
We brought him home on December 16, 2020 and our family is complete. Karson is now a happy, healthy 2-year-old with no hearing issues or other noticeable effects from chemo.
I had my first PET scan following treatment on January 29, 2021. The waiting was hard, but they wanted to give my uterus time to go back to its normal size. I was so relieved when my results indicated no evidence of disease. On March 30, 2021, at three months postpartum, I had a radical hysterectomy at the recommendation of my medical team. Even though my husband and I had already planned to be done having children (he has a son from a previous marriage, and we have two together), I still struggled with the fact that the choice was no longer ours alone and was so final. I had hoped one day that my husband would have a vasectomy, but I didn’t imagine that I would go through such a major, life-altering surgery. They removed my uterus, cervix, upper part of my vagina, fallopian tubes, surrounding tissue, and 10 lymph nodes from my pelvic area. They also removed a cyst from one of my ovaries but left my ovaries so I wouldn’t go through early menopause (hopefully!) and moved them up in case I would ever need radiation to my pelvic area. I have a scar that runs vertically from my c-section scar up and around my belly button. The pathology from my hysterectomy came back clear and praise God I have had no further evidence of residual or metastatic disease from any of my scans! I celebrate January 29, 2021 as my cancerversary date, the date of my first clear scan.
Pregnancy is hard. Pregnancy with cancer is harder. I am so grateful to have had amazing support and care from my medical team, friends, family, and strangers that I have never even met. Without them, I wouldn’t have been able to remain positive and hopeful through my diagnosis and treatment with all the unexpected news and complications that I had along the way. I also believe that without God’s grace, Karson and I wouldn’t be here and healthy today. I didn’t grow up in church and I don’t come from a very religious family. It took being diagnosed with cancer to bring me to my knees and bring me closer to God. It is hard to have faith when you are in the middle of the struggle and easy to wonder why God allows bad things to happen to good people. God didn’t promise us that we wouldn’t go through hard times, but He did promise that he would never leave us (some of my favorite verses – Isaiah 43:2 and Joshua 1:9). I was saved during my cancer treatment and have since found a wonderful church family and my faith is stronger than ever.
I am hoping to celebrate two years NED at the end of January. I have found that just because someone is free of cancer doesn’t mean that they are cured of cancer. Some people think that once you get the “all clear” things can go back to normal and you can move on with your life, but cancer forever changes every part of your being – your heart, your soul, your mind, your body. For many cancer survivors, there are everlasting physical effects from treatment, and the worry and anxiety of recurrence is always there in the back of your mind. You become so much more aware of your body, and every time something feels “off”, every pain that you feel, every twinge that you have, you cannot help but wonder if it is back. I think with time it will get easier, but the fear is something I think I will live with for the rest of my life.
I believe my purpose is to be a light for others facing cervical cancer, especially those facing it while pregnant. I want to continue to share my testimony and use my survivorship to provide hope, encouragement, and awareness. Whether you are newly diagnosed, going through treatment, dealing with a recurrence, or have no evidence of disease, please know that you are not alone. You have support with Cervivor and there is hope! You are brave, strong, beautiful, and resilient. Don’t give up!
Brooke Wyse is a stage IB1 cervical cancer survivor and member of the Cervivor community. She lives in northeast Indiana with her husband and their three children, ages 2, 7, and 17. In addition to her efforts to spread awareness and end the stigma and shame of HPV and cervical cancer, Brooke is also passionate about mental health and addiction recovery and works as a manager of DCS services at a community mental health center. In her spare time, Brooke enjoys spending time with her family, reading, crafting, and roller skating.
Every January, our community commits to bringing their global voices together in unison to talk about and bring awareness to cervical cancer and what it means to be a Cervivor.
Cervivor is a movement and a community. A community of people who find themselves holding on together because of the most life-shattering circumstance possible — a cervical cancer diagnosis.
As we say so often, we are in a club that no one wants to be in but having found each other brings us hope, support, and a platform to bring the visibility needed for cervical cancer prevention and awareness.
We come from everywhere. Urban cities, rural communities, countries across the globe, suburbs, and everywhere in between. Our diagnosis, treatment plans, and the way we move within our cancer is different for each of us yet when we arrive at Cervivor we realize we have a collective voice that is unstoppable.
Maybe you took that first step and shared your cervical cancer story. You typed out the nitty gritty of being diagnosed with a cancer that is rarely talked about and far too often stigmatized. And then you went on to read the stories of other women, some so similar that you immediately felt connected. That’s where it begins, this community of Cervivors.
These are your words, our collective voice, and this is what being a part of the Cervivor community means to you.
THANK YOU CERVIVOR TEAM @iamcervivor for your eyes to see, your ears to listen, and your hearts to heal. Let’s keep spreading awareness and support our fellow CERVIVORS who need us the most! ~ Arlene
This came just in time to accompany to my first chemo (this time around) tomorrow. Bring on healing and killing cancer with strength. ~ Laura W
I just got the sweetest note in the mail. Totally lifted me up. Love all my Cervivor sisters! And you’re right, with having all of you in my corner, I’ve totally got this! This is just a small bump in the road, but onwards and upwards! ~ Tammy
I just came home from my nephrostomy tube exchange to this amazing gesture that brought tears to my eyes. Team Cervivor you all are amazing, your support and kindness goes beyond anyone’s expectations and I am eternally grateful to be part of this group. Thank you! ~ Carmen
Today I’m very grateful for this beautiful card! Words can’t describe how thankful I am for finding out about this group I wish I could have found it earlier! ~ Alexia
Thank you, Team Cervivor, for making a rough week a little better today! I’ve been down with the flu all week, and solo parenting on top of it. This was such a sweet delivery today. ~ Anne Z
So much love! Thank you, Cervivor, for always being there! ~ Joanna
Team Cervivor is truly the best; sitting here crying… thank you. People don’t understand the milestone this means… but it is so wonderful to be a part of this group who really do get the relief we have for making it to this one-year mark! Thank you for all your hard work behind the scenes and for us! ~ Victoria
Thank you Cervivor for giving me this opportunity to be among this great and strong team. ~ Milicent
Thank you, Team Cervivor for the birthday card. I have been feeling down because I was a little bit under the weather but this card made my day. You guys are awesome and thank you to everyone in this group for making this community wonderful. ~ Anna
I came home yesterday to goodies and a nice book after a trip with my mom to the oncologist. I felt really down that I couldn’t do as much as I wanted to during last month and I was hard on myself, so when I received this from CERVIVOR, I was happy for the uplifting and encouragement. Cervivor is amazing for all that they do to assist all of us in being empowered and also caring for ourselves. ~ Kyana
We are Cervivor. You make this a community by uplifting each other with grace and compassion. You share the difficulties cervical cancer can bring yet you always make sure to check in with each other. Thank you for being here, for sharing your stories, and making this a safe place for all.
It is with our deepest sympathy we announce the passing of our dear community member, Jodi Madsen.
After being connected through our monthly virtual support group, Creating Connections, Jodi felt she had found the community she had been seeking. She was a wordsmith and gifted us with several blog posts to share her deeply personal connection to cervical cancer.
Jodi had what we call the “Cervivor Spark” about her. She took her diagnosis and turned her voice up in a way that others would take notice and understand how we’re more than a cervical cancer diagnosis. We’re daughters, sisters, mothers, aunties, best friends, coworkers and so much more.
She utilized her social media platforms to create informative reels which earned her the Brittany Wagner Social Media Advocacy Award from Team Cervivor. Jodi would later get recognized by a global pharmaceutical company to share her experience and make an even bigger impact.
She was such a bright and supportive light in our community attending one Creating Connections after another – always with the biggest smile on her face and an occasional tear or two from seeing the impact of sharing our stories throughout the year.
She shared, “Getting to listen to my friends brought in a brightness I needed so deeply in my soul.”
Our thoughts and prayers are with Jodi’s two sons, her husband, family and friends, and our entire Cervivor community. We know how much each of you meant to her.
As someone who lost over 100 pounds, (113 pounds to be exact), people often focus on my physical transformation.
However, the physical transformation, which you can see in the before and after pictures, only shows a glimpse of what the journey is all about.
I am most proud of the discipline, determination, patience, consistency, and focus I have used through the years – to give me the energy, the joy, and the freedom I get healthier.
I am not going to lie and tell you that this journey has been easy. It has NOT been easy by any means. People often ask what was easier, me beating my cancer diagnosis or me losing 113 pounds naturally?
My answer is… nothing worthwhile is easy! They were both challenging. You cannot compare both journeys. They come with different challenges, which I can say were hard to overcome. Nevertheless, here I am on the other side.
For those who are not too familiar with my story, just let me give you a small synopsis. I was diagnosed with stage IIB cervical cancer in 2008, three months after I had retired from the New York City Police Department.
I went through 35 rounds of external radiation, seven treatments of chemotherapy, and two treatments of brachytherapy (internal radiation). In May of 2009, I had no evidence of disease.
As cancer patients know, being cancer free is not the end of our story. Many people think that we can continue with our lives and we can pick up where we left off. That is far from the truth. I consider myself one of the lucky ones because I do not have too many secondary effects from treatments compare to others that have gone through this. So many others have lost their lives too.
I dealt with depression after treatments, and found comfort in food. This took me to tip the scale at 240 pounds. I am 5’3”, so this amount of weight made me morbidly obese according to the weight charts.
Unfortunately, this situation brought consequence, and I became sick again. Diagnosed with type 2 diabetes, high cholesterol, and high blood pressure. I had to take five different medications to control these illnesses. I really was sabotaging my second shot at life, and I was not realizing it.
This realization clicked when my medications stopped working because I was not helping by changing my lifestyle. My doctor gave me a reality check – either I change my lifestyle or the next step was to start injecting the insulin to control my blood sugar levels.
I needed to do some work, no question about it. I did not want to go to the stage of injecting insulin if it was in my power to turn it around.
At this time, I made the determination that no matter how many times I will fall, I was going to get up and continue the mission. It was not as if I did not try before, I had, but this time my WHY was bigger than my prior excuses.
In 2012, fourteen months later, I had lost 113 pounds, reversing all my illnesses, and taking me off all prescribed medications.
Perhaps I make it sound easy, and some people even say that I make it look easy. I can honestly tell you “IT IS NOT.”
The following are ten things I have learned throughout these past ten years. Not necessarily in this order.
1. The journey is NOT linear – By no means is it a straight line. There will be ups and downs, failures and successes. You need to be patient because results are not going to come overnight.
2. Discipline yields success – I am not talking about restrictions. I am talking about being consistent, planning, and taking daily actions. Be disciplined about these three things.
3. Losing weight is like watching a clock – When you are doing something you do not want to do, and the more you watch the clock, the slower it seems to move. However, when you are having a good time and not worry about the clock, time seems to fly by. Losing weight is the same. The more you focus on the scale the slower it feels like it is moving. Instead, focus on being consistent and remember why you are doing it; you will be surprised how the results start to show.
4. Be kind to yourself – There are going to be some days that you will be unhappy with your choices. It happens, believe me, but it is okay. Do not throw it all away. One bad day does not dictate the days to come.
5. Block the “unnecessary noise” – This is what I call the ‘opinions of critics’. Many will have opinions, recommendations, etc. and it’s okay, let them have them. You might hear things like “you do not need to lose weight”, “you are getting too skinny,” “do this diet instead”, “do this exercise”, etc. Surround yourself with like-minded people. Your own community. Just remind yourself that this is your journey and you are the one who is making the educated choices. Go on your own pace. This is your power – exercise it.
6. The scale is NOT your enemy – I know this topic is controversial. For many the scale is a scary thing, and not too friendly at times. It took me awhile but I have learned to treat the scale as a tool that gives me information on what is going on with my body. I do not attach myself to the number. The number tells me what I am doing wrong (not enough sleep, little hydration, nutrition not on point). Non-scale victories (NSV) are great, but I still believe you need to know that number to know what your healthy weight that you are comfortable with. A healthy weight looks different on everyone.
7. Age is just a number – It might sound like a cliché, but it’s coming from me. I am living proof of this cliché. I have managed to lose weight at ages 53, 60 and 63. Often I hear things like, “I am too old to lose weight”, “I cannot move the way I used to”, etc. I was 53 years old when I naturally lost my original 113 pounds. I am an emotional eater and certain things trigger old habits; I needed to lose weight at the age of 60 and then again at 63 too. I am 63 years old and I am active, and I have a healthy weight for my body. I teach fitness classes and I have plenty of energy.
8. Make Health Your Priority – By now, you have gathered that my journey to where I am now has not been perfect. I have fallen big, but I do not give up or say, “It is just meant to be this way”. No – I refused to accept this. I am committed to making my health a priority. I know that nothing in this world is guaranteed, but being as healthy as possible gives me the best odds to have the quality of life that I deserve.
9. Alignment of Mind, Body and Spirit – I call them my three pillars. We need to work on all three simultaneously. The connection between the three of them is when we are the most powerful. We cannot work on only one because the other two will suffer. Some people might think this is pseudo-science, or perhaps woo-woo practice and that’s okay but do not knock it until you actually give it a good try. The main concept behind the mind-body-spirit connection is that these things combined give us identity, determine our health, and make us who we are.
10. The Evolution – I have witnessed my own evolution. I have evolved by my learnings, and my experiences. I know that the choices are mine. Taking full responsibility for my life, my thoughts, my attitude and my daily actions. It is not an easy task; it is something we need to work on daily. There is no finish line. There is no final goal. It is part of who you are and who you want to be.
Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown program. She is a retired NYPD police officer and a 13 year cervical cancer survivor. She resides in NYC with her husband of 23 years where she’s a Group Fitness Instructor and a Health Advocate.
Cervivor would like to thank each and every one of our generous donors who sent a gift of support during Giving Tuesday! Your generosity and kindness continue to make this organization thrive.
If you missed us, no worries! The giving season is still upon us and there are plenty of ways you can support our community outreach programming:
Donate to our NEW Cervivor Book Club
That’s right! We’re starting a book club and we hope that you’ll help support this initiative by donating the books from our Amazon Wish List here.
Do you have a gently used copy of the books on our list that’s taking up space? Email us to find out how to donate to our programming!
Sponsor a Limited Edition Self-Care Box
We have a small quantity of boxes that were carefully curated by Team Cervivor available through the Cervivor Shop. They feature products created by cervical cancer survivors in our community. These boxes were specifically designed for cervical cancer patients and survivors and will make the perfect gift for the holidays! Interested in sponsoring a box? Send us an email at email@example.com!
Join our Virtual Pap Rally & Run
It’s back! The Virtual Pap Rally & Run will be starting January 1st and will go through January 29th in honor of Cervivor’s 18th birthday. To join, create a team, join a team, or become a team of one. Create a goal that you choose; just make sure it has a version of the number 18 in it. Post your pictures on our Facebook event page while putting your personal goal into action or tag us on your social media platforms – wearing your teal and white is a bonus. To learn more about the event or create or join your own team, visit our race page here.Download and share the event flyer with your friends, family, cancer centers, gyms, churches, etc.
Become a Monthly Donor
Replace a coffee once a month with a $5 donation (or more). Your donation will go towards grassroots organizing and program support by providing funds for printing, postage, and support bag materials to help cervical cancer patients and survivors to connect in their local communities so no one has to feel alone.
This year, shop, donate, and volunteer with purpose. Every gift that is presented to Cervivor directly impacts the community of cervical cancer patients, survivors, and thrivers.
Where our community continues to grow quickly, we’ve been able to spread our collective wings and soar higher toward our mission of ending cervical cancer -all while supporting the members of this amazing community. This season represents togetherness and gratitude and we want to share what’s in our hearts and how you have been the center of our thankfulness.
“I am thankful for the relationships that have been formed from one of the hardest aspects of all of our lives. It warms my heart so much to see people in our community going through a hard time to still show up for others. It’s what makes our community extra special.” – Tamika Felder, Cervivor Founder & Chief Visionary
“I am beyond grateful to be able to connect with and serve so many incredible people in the Cervivor community. It truly makes my job so much bigger than I could have ever imagined it to be.” – Morgan Newman, CervivorCommunity Engagement Liaison
“I am thankful for the dedication, hard work, and effort that so many within our community make towards our collective goals!” – Heather Banks, Cervivor Lead Advocacy Educator
“I am grateful that our Cervivor community is full of compassionate people, from all over the globe, who never hesitate to uplift one another and that many have chosen to make their survivorship a beacon for change.” – Carol Lacey, Lead Cervivor Ambassador
“I’m grateful to this community because we are people woven together. We lean on one another, learn from one another, celebrate together, and grieve together.” – Patti Murillo-Casa, Cervivor Wellness Instructor for Survivor Slimdown and Co-Lead for Cervivor Español
“I am grateful for our Cervivor Community. The fact that we share with each other cultivates our relationships and our passion in ending cervical cancer. Each one of us is cog in this intricate machine that is advocating for our health. This is what I find beautiful and makes me feel grateful: we are not alone, and with that fact we can accomplish our mission.” – Karla Chavez, Cervivor Español Co-Lead
“I am forever grateful for our Cervivor community. The support and understanding allowed me to know that I am not alone. The education and empowerment has allowed me to be an advocate for myself and many others.” – Karen North, Cervivor Community Administrator
“I am grateful that I have cervical cancer sisters that understand my journey, they understand my lows and frustrations because they have been there. At times, as a cancer survivor, you can feel alone because people don’t ‘get you’. With the Cervivor community, I know that I am surrounded by women that understand me.” – Kimberly Williams, Cervivor Community Administrator
All of you strengthen our resolve to keep doing the work of bringing cervical cancer out from the shadows. Thank you for being a community of light for so many. The world is listening and together our voice is strong and steadfast in its resilience. We are Cervivor and ending cervical cancer is within our reach.
Each November we celebrate those who we as cancer patients and survivors consider to be our heroes, our confidants, and our lifelines. They are the ones who continue to show up day in and day out, day after day to help us navigate the ups and downs of our complicated cancer world.
No one can walk through this alone, nor should they. We know all too well how it takes a village and then some. Being a caregiver isn’t just loving someone, it’s digging through your own fears, using all of your heart, and becoming the light for the both (or group) of you.
Our community shared the people in their lives who make things brighter and kinder, and who continue to be there for them in every way. On this special edition of Teal and White Tuesday, we are standing on our mountain tops shouting our gratitude and love to all our besties, our mothers, fathers, sisters, children, nieces, partners — every loved one who has held our hand, drove us to endless appointments, rallied meal trains, helped with childcare and never hesitated to be our Teal and White Tuesday cheerleaders. You are all amazing and so very appreciated!
My best friend and husband Sota! This is the photo of when he made me laugh while I was struggling with radiation in the waiting room at the radiology clinic. He was there for every single appointment with me. ~ Anna
My brother Mario! He traveled from Mexico City to drive me to chemo appointments and take care of me afterward. He is the best nurse ever! ~ Gilma
My mom and sister were here with me a couple of days after my hysterectomy. They surprised me with their new shirts! ~ Livvy
My tribe have been my biggest supporters (along with my family of course!) ~ Kimberly W.
My husband has been so strong for me even though he was suffering too. ~ Alexia
This is my best friend Erica, she calls me her platonic wifey. We’re going to be Golden Girls together. She delivered me to radiation appointments, brought me food, and entertained my teen throughout my treatments. ~ Laura
My hubby Richie. He always puts that smile, calmness, and sense of peace in this journey. Our daily: Laugh at each other and with one another! ~ Arlene
My brother Luis took care of everything from rides to another city for my treatments and surgeries, to taking me out for a burger (without my doctor’s permission!). He made me laugh and made sure I always felt the love. ~ Karla
My tribe… I couldn’t do this without my husband, family, and friends. ~ Jenn
Dave, Braylon, and Kiara. They are my world! ~ Tammy
I had a village too, but my main two people were my sister and my mom and to this day, they still are. They came to every single appointment and treatment. Three years on now and my sister does my dressings every week and both help me when fatigue still hits. I’d be lost without them. ~ Kim
My Mom! She came from Puerto Rico to be with me during my surgery and all my treatments. It was a blessing having her; she made sure I was eating well and resting. She lived all of this experience with me and it made us bond even more afterward. Words cannot describe the love I have for this woman. ~ Carmen
We thank our community for sharing such wonderful lights with us and we encourage you to continue to share your caregivers with us all year round. Send us a photo and a small blurb and we’ll highlight them!
Did you know we have a special shirt just for caregivers in our online shop? Check them out here.
Cervivor and St. Jude partnered for an all-HPV cancer survivors school to train patient advocates representing anal, cervical, oropharyngeal, vaginal, and vulvar cancers.
The weekend kicked off with a welcome reception and special message from Founder and Chief Visionary, Tamika Felder. The evening was filled with conversation and an energizing music compilation from DJ Malone. (You better believe there was some dancing to be had – ehem, Jason).
Saturday morning started bright and early with information-packed sessions ranging from learning the basics of HPV and cancer to finding your voice and expanding the survivor advocacy footprint.
We heard from Andrea Stubbs, MPA and Administrative Director of St. Jude’s HPV Cancer Prevention Program and the important work that St. Jude has been working on in the HPV cancer prevention space. Dr. Heather Brandt gave us the latest data on HPV, HPV cancers, and what advocates need to know.
Lead Cervivor Educator, Heather Banks and Tamika Felder led the attendees through how to make their survivorship count. Their session was followed by a patient panel moderated by oral cancer survivor, Jason Mendelsohn, and featuring anal cancer survivors, Lillian Kreppel and Calvin Nokes, as well as cervical cancer survivors, Karla Chavez and Kimberly Williams.
After lunch, Visibility Coach and Founder of the REP Network, Roshanda Pratt ignited the advocacy flame in helping the attendees identify their stories in just three words. Roshanda is known for her mantra of “Visibility is power” and she has helped us understand that “Transparency is the new currency” and that it is progress over perfection in our advocacy that matters most.
We heard from Dr. Vetta Sanders Thompson, an E. Desmond Lee Professor of Racial and Ethnic Diversity and Associate Dean for Equity, Diversity, and Inclusion at Washington University in St. Louis. She gave us a psychological, data driven presentation over addressing the common concerns about HPV vaccination with an interactive activity.
The day was rounded up with a presentation by Cervivor Community Engagement Liaison, Morgan Newman on how to expand the survivor footprint followed by a session of what’s next – leaving the attendees with a call-to-action. The attendees became graduates, receiving a certificate of completion and a celebratory reception including a live band at Beale Street Landing.
Cervivor, Inc. and St. Jude are incredibly honored to have hosted 30 HPV cancer survivors now turned patient advocates from across the nation (and a few international advocates too).
We invite you to join us on March 3, 2023 for International HPV Awareness Day to help spread awareness, screening, and prevention of HPV cancers. Mark your calendars now!
Cervivor, Inc. would like to take this moment to thank St. Jude for becoming an impactful partner in furthering the mission to end HPV cancers.
WASHINGTON, D.C. – In February 2022, the American Cancer Society announced they would be launching two national roundtables: one for cervical cancer and the other for breast cancer. This was a response to President Biden’s call to action in reducing cancer incidence and death rates faster. This initiative is to bring together leading organizations and experts in the cervical and breast cancer space to drive progress and improve the lives of cancer patients, as well as their families.
Improve and Align Communication: Develop effective communications about cancer screening that reach all populations; and expand and strengthen National Cancer Roundtables that include a focus on cancer screening.
Facilitate Equitable Access: Barriers contribute to lower rates of cancer screening initiation and the recommended follow-up observed among many populations in the United States; there is a need to provide and sustainably fund community-oriented outreach and support services to promote appropriate screening and follow-up care plus increase access to self-sampling for cancer screening.
Strengthen Workforce Collaborations: Team-based care has the potential to improve implementation of cancer screening but in order to accomplish this, supportive policies and a commitment to team-based care approaches are needed which include the empowerment of healthcare team members to support screening plus having the opportunity for training and residency programs; and expanding access to genetic testing and counseling for cancer risk assessments to catch cancer early.
Create effective health IT: Providers and patients alike are faced with more information than they can process in a reasonable amount of time. Health information technology (IT) has potential to help providers, patients, and healthcare systems quickly access and effectively use clinical knowledge and patient-specific data.
Cervivor Founder and Chief Visionary, Tamika Felder was invited to speak on behalf of cervical cancer patient advocates and their families to increase awareness, impact change, and work collectively towards eliminating cervical cancer. Tamika and Cervivor, Inc. have been long-standing influencers on the panel since 2003, helping to provide vision as well as patient stories. She shares, “For me it is personal. My legacy won’t be the lives that I bring into this world but the lives I will save.”
Recording artist and cancer prevention advocate, Mary J. Blige shared the personal impact cancer has had on her family in recent years and why she has dedicated so much time to awareness. She phrases a key message, “I’ve dedicated time to making people understand their health is their wealth and urging them to make it a priority.”
American Cancer Society CEO, Dr. Karen Knudsen states, “We at the American Cancer Society represent all 1.9 million Americans that hear each year that they will have cancer and we are absolutely resonating with the goal of the Cancer Moonshot to end cancer as we know it.”
Dr. Knudsen also brings to light that breast cancer still remains to be the second leading cause of cancer death for women in this country and number one for Black and Latina women. 14,000+ women are diagnosed with cervical cancer and over 4,000 will die from the disease. Black and Latina women are again, impacted at nearly twice the rate as their Caucasian peers.
First Lady, Dr. Biden emphasizes there should be no woman left behind. There is an absolute need for collaborative efforts including the patient advocate voice because this impacts us all. The focus is to put patients and their families at the center of their cancer – from diagnosis to survivorship and we are rewriting the narrative of cancer.
“We don’t have to be afraid of cancer anymore!”
We stand with the First Lady, the American Cancer Society, and so many more leading organizations. We are committed to this mission as we are reminded of the daily impact in our community of a cervical cancer diagnosis, the treatment and difficulties in survivorship, and of those lives that have been lost from a preventable disease.
I was born in the US in the late 1950s. Both of my parents were born in Nicaragua, Central America. Even though I was born in the US, my grandparents raised me in Nicaragua until the age of eight. At that time, I returned to live with my parents in New York City. Making my first language Spanish. Growing up, we never spoke about menstruation, sex, or anything related to reproductive health at home. It was taboo. Schools did not teach sex education in those days either. I learned as I went along, hearing bits and pieces from my friends.
Even though I am educated and well-rounded, sex education was a subject that I did not know much about. I only knew the basics. You might be thinking this is sad – Perhaps– but this is the way Latino parents have raised their kids for many generations. I wish someone had taught me about bodily development, and the broad variety of topics related to sex and sexuality, to have gained the skills needed to manage my sexual health.
Even today, in Latino households we do not have parents talking enough about sex education with their children. There has been improvement, but there is a lot more we can do.
Unfortunately, cervical cancer in some cultures, including the Hispanic culture, is perceived to be a cancer of sexually promiscuous people. I believe this causes great stigma and shame. We can change this perception by first knowing the facts of cervical cancer, and educating others and ourselves. Educating the next generation properly is important. Teaching them about all the risks that exist, besides getting pregnant at an early age.
At the time of my diagnosis, I felt ashamed of having this type of cancer. I did not know too much about it nor did I know how I got cervical cancer. I had to educate myself so I could properly explain it to my family. My shame resilience came with time. You need to remember that a particular belief passed from generation to generation is hard to change and hard to let go.
Today, I am an advocate and an educator on cervical cancer. I educate women, especially Latinas, on the tools we have to prevent this type of cancer. Latinas are the demographic most diagnosed with cervical cancer. The two main reasons why are a lack of knowledge about the disease, and a lack of screening. However, we can take steps to change the fate of many.
Over the past 10 years, I have teamed up with my oncologist to provide free cervical cancer screenings for women in NYC who may not have medical insurance.
I was declared cancer free in 2009, and I use to visit my oncologist every three months for check-ups after that. In 2010 when I became an advocate, I use to come in and tell my doctor about all the work and advocacy I was doing in NYC.
We developed an awesome patient/doctor relationship; he saw my enthusiasm and passion for the mission of eliminating cervical cancer. One day, during one of those visits, he said, “Patti I want to help you and the Cervivor organization with your mission. Let’s offer FREE screenings to uninsured women.” I looked at him, smiled, and the only thing that came out of my mouth was, “Are you serious?” He smiled back and said, “Yes, let’s make it happen.”
However, before we set up a date, he needed to put everything together. He needed to make sure that the lab was on the same page to not charge patients for processing the Pap/HPV test. He also needed to gather medical staff to come in on their day off, and donate their time.
This was amazing. I could not have asked for a better offer. On May 19, 2012, we held our first FREE screening event. It was a huge success. We have been offering this program annually since that first day and this year marks our 10-year anniversary.
We have also collaborated with other departments within the hospital, and for the past four years, in addition to cervical cancer screenings, we have offered FREE mammograms and FREE colon cancer screenings for uninsured men and women in the community.
Dr. Jason Wright and his staff at the Division of Gynecologic Oncology at Columbia University/NY Presbyterian Hospital are committed to this mission. Dr. Wright has always been supportive to the Cervivor organization and my advocacy work. I am so thankful to him and his staff for putting these events together. Because of them, hundreds of women have been screened throughout the years, and many lives have been saved.
Patient advocates and their oncologists can create a partnership together to reach more women in the community, and offer education, screenings, support, or mentorship to women that need these services.
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.
September gave us an opportunity to bring more awareness to multiple gynecologic cancers that affect over 604,000 people globally every year. As below-the-belt cancer activists, Cervivor knows how important it is to talk about cancers that have less visibility than others. The more we share, the more awareness we raise.
October is Breast Cancer Awareness Month (BCAM) and there was a time when no one was talking about cancer, especially ‘boob’ cancer. It was organizations like Susan G. Komen and the National Breast Cancer Foundation that paved the way. Yet, despite the sea of October pink, an estimated 685,000 people globally died from breast cancer in 2020. Inclusive healthcare and continued awareness is still needed to reduce this number.
Here’s where both above- and below-the-belt cancers are similar: They are all destructive and take far too much from us. Many of us struggle to accept our changed bodies; the physical and mental toll it takes to rediscover ourselves. We are all in the ‘cancer club’ regardless of what color our awareness ribbon reflects and conversations help break down taboos and stigmas.
This month we are sporting pink and supporting our fellow breast cancer survivors and patients all while waving our teal & white. The Cervivor community has members who are both breast and cervical cancer survivors – like Karen and Laura, who make sure to share their stories, especially in October and again in January for Cervical Cancer Awareness Month (CCAM).
We also support our community members – like Kadiana, who knew she was at risk for the BRCA-1 gene after losing her mother to ovarian cancer. We have a commitment to support inclusive cancer prevention efforts because by doing so, we elevate those less discussed cancers like cervical. We will call upon our cancer community friends and partners come January to spread our message of cervical cancer prevention, so let’s give a voice to breast cancer awareness and prevention this month!
The 13th patient advocacy training known as Cervivor School was held in Music City U.S.A. or better known as Nashville, Tennessee. This was an intimate group, made up of first-time and returning attendees and we hosted some of the most dynamic speakers to educate and empower our 2022 class.
Like any other Cervivor School, we kicked it off with a special Welcome Reception where attendees were able to mingle and get to know each other right off the bat. We heard inspiring words from Heather Banks, Lead Advocacy Educator, and Tamika Felder, Cervivor Founder and Chief Visionary.
Tamika and Heather kicked off the first day with a dedication to and moment of silence for those who have died from their cervical cancer and are no longer able to share their stories. It was a powerful reminder that our mission to end cervical cancer is not over and there is still much work to do. Tamika also shared how putting a human face to cervical cancer is a critical part of our cause and why we should share our stories.
Later we heard from Community Engagement Liaison, Morgan Newman, Lead Cervivor Ambassador, Carol Lacey, and Cervivor Ambassadors, Karla Chavez and Karen North. They shared what it means to be a patient advocate, how they fulfill the role to make an impact, and what advice they have for others in mastering survivorship and advocacy. Then we heard from Michelle Whitlock, author of “How I Lost My Uterus and Found My Voice,” and how she decided to use her voice after cervical cancer followed by empowerment groups and a session on life during and after treatment with Heather.
Cervivor Ambassadors Carol Lacey and Morgan Newman led an interactive session, Healing Through Writing, in honor of Erica Frazier Stum who thought of and led the session in the years prior. After listening and sharing each others’ creative writing, we ended the day by creating an individualized advocacy action plan to be put in place after leaving Cervivor School.
Day two is our Medical Day where we get the latest and most advanced information on the human papillomavirus (HPV), the HPV vaccine, and cervical cancer screening. We started the day by understanding cervical cancer screening guidelines, the impact of the patient perspective, and how important it is in our advocacy work. It was a great reminder from Dr. Lia Bos that our stories are powerful and when we partner our voices with physicians and clinicians in the field, we leverage our impact even more. We also heard from Andrea Stubbs, MPA, representing our community partner, St. Jude, and their HPV Cancer Prevention Program. She shared her work and provided ideas and information about supporting HPV vaccination efforts so we can powerfully advocate for vaccination as prevention!
We were inspired by Catherine Tyler as she led us through a discussion on living with and through significant illness and treatment while staying true to our aspirations and our authentic selves. And Tamika and Heather helped our attendees practice potential advocacy scenarios, establish advocacy norms, and finalize our advocacy action plans to put in place after leaving Cervivor School.
Lastly, we rounded out the Cervivor School weekend with a graduation ceremony for our attendees and Tamika awarded not one but two Cervivor Champions for 2022!
Jenn is a metastatic and recurrent cervical cancer patient currently undergoing treatment and is still leading and advocating despite it all and Kimberly continuously shares the importance of vaccination and cancer screening when it comes to HPV, cervical cancer, and communities of color.
Our newest Cervivor School graduates are empowered, ready to share their stories, and eager to connect with leaders in their local communities. Team Cervivor cannot wait to see their advocacy in action and how they decide to make their survivorship count!
In the months of September and October, we are celebrating our Hispanic heritage.
History supports our struggle and power to overcome difficulties. We are brave, passionate, and colorful people. We also come from many beliefs and cultures, some of which can be obstacles.
It is a reality that many Latinas die from a disease that can be prevented. The lack of education, the lack of specialization of our doctors, and the HPV taboo are our challenges to overcome in order to win the war against cervical cancer and other cancers caused by the Human Papillomavirus.
I was 34 years old when I was diagnosed and in a country where our sex education is given in science and biology classes, but discussed little outside the parameters of our classrooms. Being able to accept and share that my cancer was caused by HPV gave me freedom. I talked about it with my family, and I remember having the feeling of, “What are they going to think of me?“ They really didn’t care. Their only concern was my health.
Being diagnosed with a cancer caused by HPV carries with it a taboo in my culture. We often do not discuss this with anyone because we do not want them to judge us, much less reject us. Many times we struggle alone with feeling guilty. This stigma must be overcome. We must trust that we will find support, in our family, in our friends, and/or in faith. The way to overcome this issue is to talk about it without fear, so that the next time we hear about cervical cancer, it’s because it is being prevented. We want our communities getting vaccinated and that we don’t wait ages for our doctor appointments.
A doctor told me, “the vast majority of us will have an HPV infection at some point, what we need is to remove the stigma behind those three letters and attack it.”
This resonated with me. It made me feel that even though I didn’t know much about what was happening to me, it wasn’t my fault. It is something that I had to go through, and I must overcome it.
Once I took away the power that guilt had over me, I began to fight. I have had the joy of having my family as my support team. We have fought with a lot of faith and love. Which is one of the characteristics of our Hispanic culture, keeping us together as a family no matter the situation.
I am also sure that my doctors were the answer to my prayers in my moments of fear. I received 8 chemotherapies and 35 internal radiation treatments. After a total hysterectomy and colostomy surgery, I have made it my mission to never shut up about what I went through. Because to someone out there, something in my story will resonate and they will act. Either getting vaccinated, scheduling their cancer screenings, or vaccinating their children.
I’m still here to celebrate life and the month of Hispanic heritage. I’m still here to tell you that cervical cancer can be prevented. That there is a vaccine that can save the lives of hundreds of thousands. I’m still here to talk to everyone about the vaccine and prevention.
When I was diagnosed, I wanted to fight and win. Now that I celebrate 5 years without evidence of disease, I want to fight and overcome the stigma, the lack of education about HPV, and its relationship with various types of cancer.
After attending Cervivor School I learned how to share my story, how to speak up, and be the voice that can resonate with someone else.
I have had the opportunity to participate in talks at universities, high schools, religious groups in my country, and in workplace meetings, and always that I can to each person that wants to listen.
I want everyone to get the HPV vaccine, to make their cancer screening appointments so that together we can dream of a Honduras and a world free of cervical cancer.
Fellow cervical cancer survivors/patients, I leave you with a mission: Share your story, because your story will resonate with someone.
Visit Cervivor.org to share your story with an easy-to-follow template!
Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 5-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019Cervivor School graduate, a Cervivor Champion Award recipient, and is a key support to our growing Cervivor Espanol community.
My name is Jodi Madsen. I am an active cervical cancer patient, in both treatment and spreading awareness about the importance of women’s health and HPV. I was diagnosed with stage 3C2R adenosquamous cell carcinoma of the cervix in February of 2021. I live in North Dakota with my husband, who serves in the United States Air Force, and our two little boys. North Dakota isn’t really your prime real estate for any medical specialty, so if you’re going to go looking for gynecologic anything, you’d have the same amount of luck finding oceanfront property outside their practice. I travel ten hours to Omaha, NE for every single appointment since there are no qualified persons within a reasonable range. My insurance had some input on that decision and actually was kind enough to make it for me! While I love my care institute, I am sad to miss out on living closer to women in similar situations and being able to participate in support groups.
From the beginning of a cancer diagnosis, there is one word that has always lingered close by. Lonely. I think the bottom line of that comes down to knowing I can’t convey my feelings correctly to those I love and that is incredibly isolating and frustrating. There are so many things that instantly change when you become the patient that you don’t even realize. In an effort to de-alienate myself I started a blog. I started it for many reasons, the biggest was to hold the connection with my friends and family, as well as nurture new connections and share with women unfortunate to be met with the same diagnosis should they run across it in the future. That blog gave me a spark and was always something for me to do to pull me out of the gallows. Believe it or not, even the most annoyingly chipper of us end up down there quite often. I haven’t written much lately and the “Oscar” radiating off me is uncanny.
One day last fall, I was scrolling Facebook in a large cervical cancer support group, and I saw someone asking for help with writing blogs for CCAM (Cervical Cancer Awareness Month) for a smaller organization. Nervously, I mentioned that I have been writing blogs about my experience. I liked the organization’s page, joined the private group, and began freaking out. Who do I think I am, thinking I can use this voice? Until I saw the community I just stepped into. Each question is answered with care and love no matter the nature. Every single woman is encouraged to share their stories. Not a writer? They have prompts ready! I was so happy seeing the patient being the center light here and what looked like genuine friendships showing up all over the place. What is this wonderful island offering me so much hope after less than ten minutes of interaction?! Cervivor!
Not long after these first few interactions, a day came along with an event called, Creating Connections. It was a Zoom meet-up with a speaker and two Cervivor Ambassadors acting as moderators to keep the conversation loosely based on parenting with cervical cancer. It was my first interaction of the sort that was like a support group and it was wonderful! There were about 15 women present and after we took turns giving small introductions to our stories, we were able to listen to some wonderful pointers on how to explain things to our little kiddos regarding treatment, medications, time away from home, and other key confusing factors for them.
That night I met a pal, Caroline. Caroline stood out because she has little children too, and lives near where my husband is from. Just like that, with a two-second snippet of her introduction, I knew I had found a person to meet in real life when I am in that area. Because I joined that online meet-up last October, I now have a friend to show me a new coffee shop and get away from the family for a bit when I join my in-laws for a week. How cool! Let’s add this to the list of incredible feelings I get from being a part of the Cervivor community. The power I feel that I have gained from the support of both the Cervivor organization and the Cervivors themselves is insurmountable! Talk about a boost!
As time has passed and treatments have come and gone, I have become less active in both my own blog and posting in support of Cervivor. Many reasons have contributed to my absence, but because of the family environment, I can always hop back in like I never left. Much like I did a few weeks ago when attending another Creating Connections. I was on the road, so I had to be muted for most of it, but getting to listen to my friends brought in a brightness I needed so deeply in my soul. What I didn’t know I was needing, as a cherry on top, was the number of attendees waiting to introduce themselves to the rest of us. Several of the Creating Connections meet-ups I have been to have been about the same 12-20 people in attendance. We are able to make deeper connections and learn much more about each other when it is the same smaller group of us, but there is an absence of diversity.
So when I logged on to see nearly 30 women in attendance, I was in shock! (And also a little curious about how long it would take us to get through introductions! Ha!) There were women with brand new diagnoses and women who have been a patient for months and had just found Cervivor. In every case, each new introduction tugged on and successfully pulled some tears. Where I was nearly a year ago, here these women are fulfilling what I had dreamed for the reach of Cervivor. I have wanted to see more women finding this incredible group sooner in their journeys, and it was happening right before my eyes. Every time I thought about these beautiful women that came off so incredibly strong right out of the gate, the tears overtook my hard-shelled heart.
I know how hard everyone in the Cervivor community works behind the scenes, and it’s amazing the amount of things you see put together. The number of things they are constantly working on would blow your mind. To be associated with these hard-working ladies is an honor, and to be able to recognize the growth of the group is so cool! I’m not sure if it is success that you can measure by attendance and participation, but it sure feels like it. Thank you, Cervivor, for giving me another home that just fits, and the opportunity to see the growth and success, as well as take pride in such an incredible organization. You help me live through so many seasons, and with this one, I am beaming with pride.
Jodi is the recipient of Cervivor’s 2022 Brittany Wagner Social Media Advocacy Award and is a passionate advocate. She shares the highs and lows of living with cervical cancer and brings light to our community.
When the calendar turns to September, it’s a good reason for anyone touched by gynecological cancer to share their story because September is Gynecological Cancer Awareness Month (GCAM).
For those of us in the Cervivor community, September is a significant opportunity to pull out our advocacy boots (and dust them off if they haven’t been used in a while), put below-the-belt cancers in the spotlight, and pick up our momentum to carry us through the remainder of the year.
Why is GCAM so important?
Late-stage cervical cancer is being diagnosed at higher rates in the United States. Historically, cervical cancer has disproportionately impacted Black and Hispanic women. In this study, the overall prevalence of the disease was higher in Black women and there is a large increase in diagnoses for Non-Hispanic White women (CNN).
Uterine cancers are on the rise, especially in Black women. It is quickly making its way to becoming the third most common type of cancer among women (NY Times).
Fertility and quality of life are still impacting those diagnosed with gynecologic cancers (Oncology Nurse Advisor).
Intersectionalities in sexual orientation as well as race and ethnicity show significantly lower odds of undergoing routine cervical cancer screenings (Health Day).
Reducing social detriments can improve quality of life, increase survival rates, and close the gap in racial disparities (ASCO Post).
We know there are so many more to list which is why Cervivor continues to be actively engaged in gynecologic cancer awareness. We’re committed to sharing our stories, spreading awareness, and showing the people impacted by gynecologic cancers. We’re facing these disparities head-on!
How can you get involved this GCAM?
Share Cervivor content during GCAM. We will have plenty of graphics, articles, and other resources to share with your social media network, across all platforms. Make sure to follow us on Facebook, Twitter, Instagram, TikTok, and Pinterest.
Wear Teal and White on #TealandWhiteTuesday. Don’t forget to tag us on Instagram and post your photos in the comment of our Facebook posts!
Share your Cervivor Story. Have you shared your story with us on Cervivor.org? Sharing your story on our site is a powerful tool for getting your story out there. Our template guides you with questions, to help you share your cervical cancer story in a way that is personal to you. You can share as little or as much as you like. Once you have submitted your story and it is published, you will be able to share the link with others. Need help getting started? Send us an email at firstname.lastname@example.org!
Contact local media to share your Cervivor story. Many times, local news stations, newspapers, and neighborhood publications are looking for content. Reach out to them and share your story. If your story is on Cervivor.org, share the link with them when you reach out.
Host a Cervivor Meet-Up. Meet-Ups are local gatherings of Cervivors, networking and sharing in a social environment. You can hold a Cervivor Meet-Up in a coffee shop, restaurant, bar, or anywhere you feel is a welcoming and relaxed place for Cervivors to talk and share. If you’re interested in hosting a Cervivor Meet-Up in your area, contact us at email@example.com. *Cervivor recommends following the latest CDC recommendations for any gatherings.*
Become a Partner in Purpose. From care team to community member, your role in cervical cancer awareness, treatment, support, and prevention is of the utmost importance to us. Interested? Sign up here.
August is Black Philanthropy Month! Join us today to give back to Black-led nonprofits. We’ll be highlighting the important work we’re doing in the cervical cancer space, members of our community, and ways we’re trying to eliminate disparities for Black women and cervical cancer.
Black women are impacted, disenfranchised, and disproportionately impacted by healthcare affordability and access, by lack of comprehensive sexual health education, and by historic mistreatment of people of color, particularly Black people, by the healthcare community.
We are addressing the disparities in sharing our stories, increasing screening rates, encouraging vaccinations, and participation in clinical trials. Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate.
We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!
I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.
Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.
Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”
I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.
Morgan Newman, Community Engagement Liaison
I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:
It was founded in 1970 at the American College of Obstetricians and Gynecologists.
In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life.
And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.
Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.
What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.
When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.
Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.
Preoccupied much? It happens. Especially when caring for yourself and others, mourning loved ones, slogging through a global pandemic, and attempting to check off all of the things from your personal and professional to-do list. Because we were quarantined and protecting ourselves, we probably missed a few important benchmarks, library books that may have been due, or our annual dentist appointment may have fallen off the calendar. We know first-hand that everything simply can’t be done. But Cervivor does want to help you prioritize the following three things before summer’s out. (Don’t worry, you’ve got two more months to go!)
1) Stay up-to-date on screenings.
Did you know? Anyone with a cervix is at risk for cervical cancer. Each year, 14,100 individuals will be diagnosed and 4,280 will die as a result of cervical cancer. This disease is the only type of cancer caused by HPV that can be detected early by a recommended screening test. It is also highly curable when found and treated early. Knowing this we will continue to share information on risks, prevention, treatment, and resources.
Your Cervivor story is unique. It helps others to feel seen. And it helps us feel heard – when we are ready to use our voice, of course. Sharing your story is also a crucial aspect in educating the public, caregivers, medical professionals, and even those funding cancer research.
Seeing and hearing your lived experiences amplifies what others, too, may be going through and helps to further research, offers a personal accounting of what cervical cancer looks like, and most importantly – empowers us more and more to thrive. Take a look at these beautiful testimonies, and consider sharing yours with Cervivor.
3) Start vaccinations early.
According to the June American Cancer Society 2021 HPV VACs Impact Report, about 3 to 4 million HPV vaccine doses were missed. “ACS health care partners maintained rates for 9- to 13-year-olds, growing shot series initiation by 2 percent for ages 9 to 10 and shot completion by 2 percent for age 13.”
Cervivor is happy to partner with organizations like St. Jude’s HPV Cancer Prevention Program, the American Cancer Society, and the National HPV Roundtable (to name a few)- all of which continue to help prevent HPV by increasing HPV vaccination rates for this age group. HPV vaccination can prevent more than 90 percent of these cancers if given at the recommended ages.
Our new mantra is “start at 9.” Giving a strong recommendation for the 9-year-olds in our lives will increase vaccination success, according to the National HPV Roundtable. When we take our young people to health providers at age 9, it provides ample time to complete the HPV series before age 11, which is when they receive their Tetanus, Diphtheria, Pertussis (Tdap) and Meningococcal (MenACWY) vaccines. More than 75% of U.S. parents have chosen to protect their children from HPV cancer with the HPV vaccine.
Since August is National Immunization Awareness Month, let’s raise that number even more! Together we can end cervical cancer, once and for all!
Take a look at how survivors in our community have shared their stories and are making a difference:
Need some additional help in prevention messaging? Take a look at the resources in this toolbox created by the National HPV Roundtable, and share with your networks, friends, and families. This impacts everyone, and with your support, we can change the course of cancer.
The purpose of the HALT method is to help us feel better when we are feeling upset and it is often used when we are feeling emotionally off-centered. The HALT method addresses how our state of being and human needs might be linked to making hasty decisions – with words, actions, and thoughts. When one or more of these areas are out of balance, we will likely struggle with (mental) health and our overall well-being.
Let’s break down each letter of HALT:
The H stands for hungry: It is well-researched that human behavior changes when we are hungry. Hunger causes us to value the short-term over the long-term and leads to hastiness with decisions. Chemicals in our brain also change to heighten anger when we are hungry.
If you discover the cause of not feeling well emotionally was hunger, you can take a momentary break from whatever you are doing, eat a handful of nuts or dried fruits, rest and enjoy them as much as you can, and allow your body and brain come back to baseline. As your body is coming back to baseline, you will think more clearly and feel calmer. This helps avoid hasty remarks and snappiness and alleviates uncomfortable moods.
The A stands for angry: Anger can be an unpleasant and damaging emotion, but it is normal to feel angry – everybody does at one point or another.
Just because you feel angry doesn’t mean there is something wrong with you. However, feeling chronic, persistent anger is unhealthy and becomes a problem when you have a hard time letting it go and it seeps into other areas in your life.
Some heathy ways of coping with anger can include stress management, spirituality, prayer, and meditation. You may find it helpful to keep a record of the things or people that trigger anger. You can then reflect on whether your anger is justified and take the “heat” out of the situation.
The L stands for lonely: When we find ourselves cut off from contact with other members of our social group or community, we can feel lonely, which can be very unhealthy. It is no wonder that social isolation has made our social interactions more difficult during the pandemic.
When we are surrounded by positive influential people who we have a strong connection with, we are less likely to engage in negative behaviors. Of course, we can be lonely even when we are surrounded by a lot of people, but that makes meaningful relationships even more important.
Finding social groups that share similar interests as you is a good first step. Maybe your daily routine is causing you to retreat into your shell. If so, shake it up a little! Calling a friend or visiting a loved one might be just what you need. You can also simply go out in the world by taking a walk, running errands, or going to a coffee shop rather than hiding from everyone. Reach out and connect with others who want to see you happy and healthy.
The T stands for tired: Making sure we get enough sleep at night can help to improve not only our physical well-being but also our emotional health.
When we are physically and emotionally tired, we are more likely to engage in a negative thinking pattern. The amount of sleep we need varies with age, but the U.S. National Sleep Foundation’s guidelines recommend between seven and nine hours of sleep per night for an adult.
The quality of sleep is also important. The brain only “recharges” properly through Rapid Eye Movement sleep (REM). This high quality of sleep level can be hampered by drinking alcohol or caffeine-based drinks in the evening or by trying to deal with difficult issues late at night.
Screen use, including checking notifications on your tablet or cellphone, can also have a negative impact on your sleep. Remember that it is best to stop using screens an hour before going to bed.
The HALT method is a wonderful reminder of the simplest things we often forget to do to take care of ourselves. Just check in with yourself periodically and ask how you are feeling in these four categories. Your check-ins can occur daily or weekly, while other times you may check in with yourself hourly. How often you use the HALT method is totally up to you!
Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the United States in 2018 and was diagnosed with cervical adenocarcinoma, stage 1B2 shortly after her move. Jessica is passionate about the mental health aspect of healing.
When my chemo and radiation treatments ended in July 2013, I struggled to return to my normal life, including my career in agricultural field research. Physically, I no longer had the stamina to work in a corn field for up to ten hours a day. Mentally, I began to question if I was even passionate about my job anymore. I had just survived cervical cancer, so I didn’t want to waste another minute in a job that wasn’t fulfilling. I felt lost and knew I needed to find a new career path that would give me a better sense of purpose.
I thought hard about what I was passionate about and how I could turn that into a career. I knew I was passionate about cancer advocacy but didn’t know how to apply that to a job quite yet. I found the field of cancer registry interesting but knew little about it. I thought about cancer registry off and on over the next few years but kept dismissing the idea of becoming a cancer registrar because it would require two years of schooling to become certified.
Cancer registries are important because they reduce the burden of cancer on the community by improving patient outcomes and ensuring funding for public health cancer prevention programs. A cancer registrar is responsible for collecting, maintaining, and reporting cancer data on all cancer types diagnosed and/or treated within a hospital or other medical facility. This data is entered into a cancer registry system, or database, that is then reported to state and national cancer registries.
Cancer registry data is used by many, including oncologists and other doctors to compare cases for treatment plans, researchers for clinical trials, public health officials for evaluation of cancer prevention programs, policymakers to determine state and national funding of cancer control programs, and cancer organizations for statistics (like the American Cancer Society).
In 2020, amid the pandemic and working from home, I decided to go for it and enrolled in an online program to become a certified cancer registrar. I am now one year into the program and am enjoying every class I take. I feel like I have a sense of purpose that was missing.
Someone once told me that cancer registrars impact cancer advocacy, policy, and research. This is so true! Knowing that my future job will impact cancer in these ways is exactly the fulfillment I am looking for in a career. It may have taken an unexpected cancer diagnosis, a lot of personal reflection, and seven years to figure out a new direction for my career path, but by the Spring of 2023, I’ll achieve my goal of becoming a certified cancer registrar. You too, can start achieving your goals in 2022, by focusing on your passions with a willingness to persevere.
Emily is an eight-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award and the 2022 Cervivor Champion Award. She plans to graduate with her certification in cancer registry in spring 2023.
When I was originally diagnosed in 2018, I decided that I wanted to recover from surgery and move on with my life. I didn’t want to hear the word “cancer” anymore. But in April 2019, my life changed as I was informed I had a reoccurrence of cervical cancer and I decided I wanted to be a change agent.
I started with my community by sharing my story with those connected to me via social media but in 2021 I felt like it just wasn’t enough. After speaking with the Cervivor community, I decided to redefine my patient advocacy in 2022.
Here’s a snapshot of how my 2022 has gone so far:
January 2022 I participated in an interview with NPR (National Public Radio) in reference to cervical cancer among Black women that was aired in Georgia and via their social media handles. I also joined the Texas HPV Coalition to raise awareness as it relates to the HPV vaccine.
February 2022 I was a panelist for the Black Women and Cervical Cancer Webinar hosted by Cervivor. My children and I were also a part of a PSA for HPV Awareness Day through the National HPV Vaccination Roundtable and Association of Immunization Managers that was featured on television and in physician’s offices in Tennessee and also via their social media handles.
March 2022 I completed volunteer training with the American Cancer Society which allows me to share my story locally through ACS CAN. I also completed a radio interview with Zakiya Jenkins who is based in Iowa in reference to cervical cancer in the African American communities. This interview was aired in Iowa and on Ms. Jenkins’ social media handles.
April 2022 I spoke at the Women of Color, Inc. brunch as it relates to cervical cancer among Black women, prevention, and early detection. I also spoke at YES Prep secondary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine.
May 2022 I spoke at Green Valley Elementary school through the American Cancer Society where I shared my story and encouraged families to research the HPV vaccine for their children. I was also chosen to be a Cervix committee Patient Advocate through NRG Oncology.
As a result, the last six months have blown my mind and have shown me just how much our stories have the power to create change. I encourage all of you to share your story. Be a change agent for this community and get active because you can redefine your advocacy in 2022!
Kimberly is the 2022 Cervivor Rising Star recipient, a joy-sparking, active member of the Cervivor community who is moving mountains.Thank you for all you are doing to end cervical cancer!
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.
Alexander Hamilton. General Colin Powell. Shirley Chisolm. And Kadiana Vegee.
These Caribbean-Americans are worthy of a shout out, and Cervivor wants to shout from the rooftops Kadiana’s name because she is the epitome of beauty and pride. As we celebrate Caribbean-American Heritage Month, we want to share Kadiana’s survivor story which reminds us of true beauty.
Having lost her mother to ovarian cancer, and her father to prostate cancer, Kadiana and her sisters took genetic tests to learn where their own health stood. While her sisters were in the clear, Kadiana’s tests revealed the BRCA 1 gene mutation. She quickly chose to have preventative surgeries.
“I had a double mastectomy without reconstruction, and I also had to have my ovaries and my fallopian tubes removed,” explained Kadiana. “ … The decision that I made was not just for myself and to stay alive, but it was also for my kids.”
The most frequent cancers in the Caribbean are prostate, breast, lung and bronchial, colorectal, and cervical cancers, according to BMC Cancer journal. Further, the five most frequent sites for cancer deaths include lung and bronchial cancers, prostate, colorectal, breast and stomach.
To be specific, Black-Caribbean women have a high prevalence of late-stage breast and cervical cancer diagnosis due to a low prevalence of screenings, according to dignity, shame, stigma, or ignorance in avoidance of breast and cervical cancer screenings among women of Caribbean Descent, published by the Open Journal of Social Sciences.After conducting focus groups, researchers concluded that a lack of trust in the health system, stigma, and shame contributed to avoidance of cancer screening – all similar to what we see and experience for ourselves.
While Kadiana acknowledges cancer will “always be a part of my life, from the long lasting side effects to the constant fear of reoccurrence,” her fervor to thrive, her beauty and her pride in taking back her life can be seen, felt, and heard. We are elated to know that Kadiana is a Cervivor advocate willing to share her story, boast her war scars, and champion the need for rights, resources and self advocacy.
“It felt like a blessing because I knew and I had the option,” said Kadiana about making her decision. “I stand unashamed … It’s not how I look on the outside. It’s how I look on the inside, and I really do feel beautiful.”
Inclusivity is the buzzword of our times right now, and Cervivor is here for it! It’s our hope that the practice of being inclusive doesn’t fizzle out like a trend, and that cancer survivors are included in the inclusivity population.
This hope also rings true when it comes to LGBTQIA issues, rights, and the cancer community. We are bringing this up during Pride Month (Happy Pride!) because many LGBTQIA+ community members who have and have had cancer do not feel welcome or understood in mainstream support groups, and transgender survivors have been specially excluded, according to the Cancer Network.
During a Cancer Network podcast interview, Dr. Don Dizon, who works on ensuring higher levels of gay and transgender participation in clinical cancer trials said, the medical community needs to “[support] people who have felt misaligned in medicine—people who have been the subjects of discrimination. Honestly, you hear the anecdotes of people who are treated unkindly, not to put it mildly.”
Many of us know the host of feelings that drench our minds the moment we hear a cancer diagnosis. The days, weeks, months, even years after, we are still overcome with scores of emotion including isolation, and feelings of not wanting to belong, are natural and to be expected. However, the actual act of being excluded – even if just a feeling of not being considered – is unacceptable and can be detrimental to our psyche, which, in turn, impacts physical health.
The 2018 LGBTQ Health in Iowa report tells us that scientific evidence has shown that sexual and gender minority individuals are more likely to smoke, be overweight, and have a greater risk of certain cancers. Further, this group is less likely to receive appropriate health care than heterosexual and cisgender peers. We’re not having it!
“We need to do better for those individuals, so that they’re not delaying access to care [and] that they are participating in our screening programs,” continued Dr. Dizon, who is also director of women’s cancers at the Lifespan Cancer Institute, director of medical oncology at Rhode Island Hospital, and professor of medicine at the Warren Alpert Medical School of Brown University in Providence.
“At the end of the day, we as oncologists all want to do the right thing. This is part of doing the right thing.”
⚠️ This content may be triggering for some. Includes infertility and pregnancy. ⚠️
Dearest Cervivor Community,
Happy Survivorship Month! No matter where you land, it’s a reason to celebrate. Even if you’re just celebrating today. We all get so caught up in milestones. It’s hard not to. Comparisons are everywhere and we all just want so much more time. But what I’ve learned over the years is that each new day is really the greatest gift. One day at a time.
Beyond National Cancer Survivor Month, I’ve got a bunch of reasons to celebrate. June is also my birthday month (yay for birthdays!), and today marks the anniversary of my radical hysterectomy at Johns Hopkins in Baltimore, Maryland.
Twenty-one years! I remember when the hospital called to confirm my surgery. I was 25 years old, shocked and terrified that I wouldn’t get to see my 26th birthday. I pleaded with the scheduling coordinator to schedule surgery after my birthday. I thought, if this was it, I was at least going to celebrate one last time. But I didn’t get my way. My radical hysterectomy to rid my body of the cervical cancer tumor that was taking over was scheduled for June 14, 2001, at 7 am. I walked myself into the operating room, got up on the table, and woke up hours later – forever changed, both physically and mentally.
The last few years have been challenging to say the least. We’ve weathered so much together, and now we can include an ongoing pandemic to that list. During the pandemic we kept the community going with virtual events. In fact, it was during one of those virtual events that I met someone so very special from our community, Ginny Marable.
Ginny joined us for several events and was even a speaker at our September 2020 Cervical Cancer Summit. While I was learning more about Ginny, unbeknownst to me, she was also learning more about me. She saw my true desire to be a mom, and the heartbreak that it would probably never happen due to my hysterectomy.
Fast forward: Ginny and her husband Sean began their path to parenthood via a gestational carrier. She shared their beautiful journey with us as a community, as well as on social media. When her twin boys were born, I was so elated for them, but if I’m honest, I also felt that familiar ping that I would never experience that moment. But I was just so happy for her, that feeling of sadness was fleeting.
Another short fast forward: Ginny reached out to me for a phone conversation. Never in my wildest dreams could I have known how that call would have changed my life. I mean, I haven’t even met Ginny in person – only through our virtual space. So, I’d like to make June even more memorable by sharing with my Cervivor community at large that Ginny is giving me an exceptional gift that I never imagined could be bestowed on me – motherhood.
Ginny has simply taken the power and love of this community to an entirely different level. We shared our unique story with Insider and you can read about it here.
My hope is that you will feel all the love, and our “Cervivor Spark”. But simply, thank you, Ginny!
With Love and Gratitude,
Tamika Felder Chief Visionary, Cervivor, Inc. 21-year Cervivor Mom-to-be
That first season of a TV, Netflix, or cable series is a total experiment. Producers wonder how the characters will resonate with the target audience. Advertisers are hopeful that their two-minute commercials and ads are crafted well enough to bring in sales. And actors cross their fingers that fans love each episode more and more, and demand a second season. The result: a cult following of a show that lasts for years, providing viewers the comfort of entertainment and solace.
While it may be a stretch, we can think about clinical trials in the same way. This method of medical research, is in fact, a pilot program for scientists to experiment, test, and prove what works, and what can result in medical breakthroughs – again, for the comfort and solace of those impacted by health challenges like cervical cancer.
You may have heard us at Cervivor championing the dire importance of clinical trials. We continue to stress the importance as this is the only way we can pave a way toward slowing down the loss of members in our community, thriving without having to lose parts of our bodies, and ultimately eliminating cervical cancer.
We said it before:
We need clinical trials to drive progress.
We need trials to determine the safety and effectiveness of every type of treatment.
And in order to determine that safety and effectiveness, we need volunteers.
We choose not to subscribe to the stigma around being a “guinea pig” or a “test dummy.” Without clinical trials, treatment, diagnosis, and prevention efforts are slowed down. The effectiveness of new medication, treatment, and therapy can only be proven through trial – and yes, error. Take a look at the thousands of trials around the globe currently recruiting patients, in addition to those that are active, completed, and terminated with results. Thanks to people including several of our Cervivor community members like Teolita, Erica, Jenn, and Linda much more work is being done daily to make sure our community – and the generation after us, and after them – can thrive.
“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” – Teolita Rickenbacker
It’s important to note that Cervivor advocates for cultural competence throughout our medical journey, including in the clinical trials process – and we should all be looking out for this. This means, making sure that the medical community understands, and is intentional about how they communicate with a diverse audience of women, whether Black, Brown, young, mature, and those who speak a language not native to their medical team. It is super important that the medical community, including those coordinating trials, speak different languages, and understand the experience of those who are part of a focus group. This important aspect aids in building and maintaining trust with those participating, which, in turn, helps us trust in both the process and the expertise of trial organizers.
Happy Asian American and Pacific Islander Heritage Month! This month, we pay tribute to the generations of Asian Americans and Pacific Islanders who have shaped America’s history. Asian American and Pacific Islander Heritage Month originated with Congress in the late 1970s and is recognized and celebrated worldwide today!
We are celebrating by honoring some of our resilient Cervivors and continuing to spread awareness to reduce health disparities within the community but first, let’s take a look at some of the glaring statistics.
In 2022, the American Cancer Society released their Cancer Facts & Figures report stating the rates of new cancer cases and the rates of cancer deaths among Asian Americans, Native Hawaiians, and Pacific Islanders varied widely, mostly because of significant differences in exposure to cancer risk factors.
Of these findings, they found that:
Cancer is the leading cause of death in the Asian and Pacific Islander population in the US.
In 2022, an estimated 14,100 cases of invasive cervical cancer will be diagnosed and about 4,280 deaths will occur in the US.
Large variations in cancer occurrence within the API population reflect diversity in terms of geographic origin, language, acculturation, and socioeconomic status.
According to the US Census Bureau, in 2020, 20% of Black and 17% of Hispanic/ Latino populations lived below the poverty line, compared to 8% of non-Hispanic White (White) and Asian populations.
In addition, in 2019, 10% of Black and 19% of Hispanic/Latino populations were uninsured, compared to 6% of White and 7% of Asian populations.
Cervical cancer incidence rates among Cambodian, Vietnamese, and Laotian women decreased dramatically from 1990 to 2008, a change that has been attributed to increases in screening and treatment in these groups.
The use of the Pap test within the past 3 years is highest among Filipino women (83%, the same rate as in non-Hispanic whites), and lowest among Chinese women (66%).
The 5-year relative survival rate for cervical cancer is 66% overall, but ranges from 39% for Black women 65 years of age and older to 79% for White women under 50, and from 92% for localized-stage disease to 18% for distant-stage.
Meet some of the Asian Americans and Pacific Islanders in our Cervivor community who want to change these statistics!
Meet Arlene, a Washington state Cervivor who recently shared her story to help make a difference in her community. She says, “In honor of Asian American and Pacific Islander Heritage Month and Mental Health Awareness Month, I am humbled to share Part 1 of my cervical cancer journey! It’s time to RISE UP and be a voice! I am no longer ashamed!”
Meet Gina, a cervical cancer patient residing in Maryland. She just learned a year ago about her cancer diagnosis less than a week after turning 32, and 13 weeks after learning she was pregnant. Hear directly from Gina as she shares her story in our CervivorTV video below – We know you will appreciate, empathize with, and want to share with your networks.
We are also super excitedtohighlightCalifornia Cervivor, Joslyn Chaiprasert-Paguio. We love Joslyn because of her energy and advocacy, and if you’ve listened to the first episode of Season 2 of the Cervivor Podcast, you know we are happy to announce that she will be taking over as the host of the podcast! Joslyn will be bringinga new perspective as a Gen Z-er and as a recurrent cervical cancer survivor. Join us in wishing Joslyn success in this new role and get ready for a new season of robust conversations to help us cope, heal, learn and thrive. Don’t forget to visit the Cervivor Podcast on your preferred listening platform and subscribe to get alerts about new episodes!
The Asian culture rarely discusses below-the-belt talk, awareness of, and the knowledge of how important their checkups with their healthcare providers are and they are highly underrepresented in our public health data, however, storytelling has made a difference in the population by increasing the awareness of HPV, cervical cancer prevention screenings, and vaccination. Studies have shown an increase in a more positive outcomes in health data.
Beyond Arlene, Gina, and Joslyn’s stories, visit Cervivor.org to meet other cervical cancer survivors repping the Asian and Pacific Islander communities and share their stories this month with your networks!
What’s your story? Are you a cervical cancer survivor? Your story matters. Share your cervical cancer story and make a difference. Click this link to follow our easy-to-use template.
In anticipation of the Season 2 release, we’re taking a look back on Season 1 of the Cervivor Podcast hosted by our very own Founder and Chief Visionary, Tamika Felder. It was a season where we laughed, cried, and learned from guests during Cervivor School 2017. We give honor and observance to those featured in these podcasts that are no longer with us. To be able to hear their voices, laughter and transparency is a special treat for us. We hope you think so, too.
“Everybody’s voice makes a difference,” says Erica Frazier Stum whose school-aged son knows his mother may be gone sooner than she should be. This podcast episode is a special treat hearing Erica’s voice posthumously who passed away in 2019.
In “Acceptance of Death: How She is Making Her Story Matter,”Lisa Moore shared her story of diagnosis, kidney failure, and coming to grips that once she passed, her 30-year-old husband would likely start a family with someone else. “I have accepted death. I’m done being stuck, I’m done being treated. I’m ready to just live my life … it’s a different kind of hope.”
Season 2 of the Cervivor Podcast is moving past the archives. Join us on Friday, May 13, 2022 for the Season 2 Episode 1 release!
We’ll be welcoming our first guest, Joslyn Chaiprasert-Paguio. Joslyn was diagnosed with the Human Papillomavirus (HPV) at the age of 18 and with cervical cancer at the age of 24. She shares her story to encourage women and future generations, like her daughter, to advocate for themselves and make their health a priority. You’ll also hear what else you can expect on this Season of the Cervivor Podcast.
In honor of the start of Women’s Health Week and for Mother’s Day, Cervivor kicked off the week with an open letter to young mothers going through cervical cancer treatment. Mother’s Day is a day that brings a lot of feelings up for us in the Cervivor community and it’s a reminder that motherhood is defined so differently for every single one of us.
This year’s Women’s Health Week theme is “Forward Focus: Achieving Healthier Futures Together.”
Now is the time to put an emphasis on scheduling those screening and vaccination appointments, to put your mental and emotional health first, and to maintain and cultivate relationships with friends, family, and ourselves.
How do we focus on building a healthier path forward?
Screening and Vaccination 101 Take the time to schedule your annual physical and other health appointments. Have a conversation with your medical care team about any vaccines or preventive care you may have missed due to the pandemic. Check off your list of preventive tests which include cervical cancer screenings, mammograms, bone density scans, stress tests, cholesterol screenings, blood pressure screenings, physical exams, and other health screenings. Don’t let the cost of preventive care stop you, there are several programs available to help with this.
Mental and Emotional Health Make time to unwind and focus on things you enjoy. Finding healthy ways to help you manage stress levels like meditation, yoga, and reading can help maintain balance with mental and emotional health. If you notice changes in your mood, behavior, and thinking that cause disruption in your day-to-day life, check in with your medical care team for further assistance. You may also want to keep these resources in your toolkit for future reference.
Nourish from the Inside Out Eating a well-balanced diet can go a long way in a healthy path forward. Check out everything you need to know about healthy eating and dietary guidelines here. If you’re a cancer survivor and are looking to for support in leading a healthier lifestyle beyond cancer, join our private Facebook group Survivor Slimdown.
Friends and Family Stay connected with your friends, family, caregivers, and community. Talk with people you trust about your concerns and how you are feeling, it can truly help things feel less scary.
Just as different as all of our cancer journeys are, so are our parenting styles and choices. My children were ages four and seven when I wrote this letter. They did not know their mommy had battled cancer twice during their short time on Earth. One day I will tell them the whole story and I hope they draw strength from it. But for now, I am so very thankful I was able to attempt to preserve their innocence throughout my treatments. They knew I had to go to the doctor often for my “tummy.” They were six months and three years old at the time of my original diagnosis and ages three and six at the time of my recurrence.
They knew they had to be careful with my arm because of my PICC line. Upon reflection, I know I drew, and continue to draw, my strength from knowing they need me. They are the very reason I managed to smile through it all. Now that they are a few years older, they have some understanding and knowledge simply because of my cervical cancer advocacy efforts and fundraising events. They both enjoy sporting their teal and white and proudly bring me drawings or things they find that remind them of cervical cancer awareness ribbons.
Dear Young Mom Going Through Treatments,
You are their safe place; their steady fortress of love, their ever-present cheerleader. Your kisses make all of their boo boos better and your hugs melt away all of their cares. A glance from you can make them feel as though they can conquer the world.
Though they haven’t a clue, they are your total source of strength during these days.
I see you, and you are doing an amazing job.
I see your brow wrinkled with worry for them. Worrying if you are handling this season of life the right way, worrying about them overhearing adults at school talking about their mommy’s cancer, worrying about what their tiny lives could be without you.
I see you grabbing your wig or hat, lathering concealer over your chemo-ridden raccoon eyes, and mustering up a smile to appear normal in the eyes of your children.
I see you planning your appointments strategically so as not to miss a baseball game or dance class. I see you insisting the doctor’s office squeeze your weekly chemo session in on their jam packed Wednesdays because there are no after school extras to be missed. I see you biting your tongue and fighting back tears while the unknowing tell you how great you ‘look’ to be going through treatments and how wonderful it is that you ‘feel’ like being out at that ballfield and dance studio.
I see you soaking up as much rest as you can during their school hours and timing your medicines just right so you can make a futile attempt to be present during homework, dinner, baths, and story time.
You just want to make sure they get every ounce of the’ normal you’ there is.
Though you don’t believe it now, your tiny sources of strength could never see you as anything less than their beautiful source of unfailing love.
Though they don’t know it now, one day they will. One day they will look back, and realize just how beautifully and courageously strong you were for them.
You can do this.
Strength & Love from A Mom That’s Been There
Tracie is a mother of two amazing boys, and along with her husband, they spend their time enjoying the beauty of Alabama. Tracie is a Cervivor School graduate, Cervivor Ambassador and a well-seasoned Lobby Day advocate.
I always thought that I’ve done very well in building up resilience, taking care of my physical and mental health, since that is basically what I do for a living. I am a Psychotherapist and am specialized in Cognitive Behavioral Therapy (CBT). I love the CBT approach in working with clients since it is a here-and-now approach, is time-limited, and is structured. I offer individualized treatment plans for each client that outline clear behavioral goals, as well as take an active role in coaching my clients by directing their therapy and assigning homework.
After undergoing a biopsy, my OB/GYN told me on my daughter’s 2nd birthday, “Unfortunately, it’s cancer”. I just sat there, repeatedly saying, “No, that can’t be true!”. I completely went into freeze response. It was like an out-of-body experience, while I was standing on the Edge of the Abyss, all around me was complete darkness. As I was shaking and crying, all I could continuously say was, “No, that can’t be true!”.
(The definition of Fight, Flight, Freeze or Fawn is the body’s natural physiological reaction to stressful events. It is activated by the perception of threat, quickly igniting the sympathetic nervous system and releasing hormones to reach the underlying goal of springing into fight, flight, freeze or fawn to decrease, end, or evade danger and to return to a state of calm and control.)
My OB/GYN’s office scheduled my first CT scan for three hours later and as my husband, who was thankfully with me at the appointment, brought me outside the office, I started throwing up while I talked to my sister on the phone telling her, “I have cervical cancer”.
At this point, I knew nothing about “my cancer”. Had it spread? Am I going to die? What stage am I? Will I see my girls graduate high school? Is it treatable? What is the chance that my cancer can be cured? What other tests and procedures do I need? How can I deal with that? I’m not the type of person that will be able to handle something like this.
The day after my diagnosis, there I was, sitting with all those thoughts, feelings, and emotions, not knowing what to do. I knew nothing anymore; I wasn’t even able to think. On this beautiful summer day, everything seemed to disappear into this deep fog surrounding me.
I, the psychotherapist, who always comes up with great treatment plans for all kinds of mental health problems my clients are dealing with, but who is now unable to even stop my own thoughts and worries. Wow, great job. I was disappointed in myself. I was disappointed in what my body had done to me by developing this cancer. And on top of that, I wasn’t even able to drag myself into a more positive state of mind. Hell, I could not even think one, clear thought.
So, when I wanted to cry, I cried. When I wanted to scream, I screamed. When I wanted to sleep, I slept. When I wanted to talk, I talked. And I went on walks, a lot of quiet, long walks. At one point, I went on Google and gathered information about cervical cancer. I reminded myself about one of the things I tell my clients, “Information is on the other side of fear”.
Then I realized that what is happening is grief. I’m grieving my cervical cancer diagnosis. I’m right in the middle of it and my psyche is doing what it’s supposed to do all on its own.
We usually reserve the word, grief, for loss, secondary to death. Well, that’s just one form of grief. Grief is an adjustment to loss. When we get our cancer diagnosis, that is loss. Loss of potential quality of life, loss of certain physical functionality. It may even be the loss of time. At some point, everyone WILL go into grief. However, not everyone will go through the stages in a prescribed order, there is no linear and predictable pattern, and we often switch back and forth between the stages.
The classical, six stages of grief are simply tools to help us frame and identify what we may feel during our cervical cancer journey:
Denial: Feelings of avoidance, shock, fear, confusion. Believe that the diagnosis is somehow wrong and holding on to a different reality.
“I feel fine.” – “No, this can’t be happening to me.”
Anger: Feelings of frustration, anger, anxiety. Faced with the new reality, looking for someone/something else to fault, to leash out.
“Why me?” – “It’s not fair.” – “How can this happen to me.”
Bargaining: Struggling to find meaning. Seeking to get out of facing the new reality by promising something to change or to do differently or seeking for help through a higher power.
“I’ll do/give anything for a good outcome/a few more years.”
Depression / Sadness: Feelings of being overwhelmed, helpless, hopeless. Settling into sadness and unable to move forward.
“Live will never be the same…” – “What’s the point of going on?”
Acceptance: Feeling of exploring different options, a new plan in place, moving on. Embracing the new reality and finality of what has happened.
“I’m going to be ok.” – “I can fight it.” – “I may as well prepare for it.”
The more we give grief space to run its course, the more likely we are to have a better outcome. Sometimes we feel guilty for taking too long to grieve. NO, WE DON’T TAKE TOO LONG! Emotions work their way through us, don’t fight them, don’t rush them.
Years ago, I went to a lecture about grief and the professor added “Finding meaning/Purpose” as the last stage of grief in the circle and that stuck with me. Now, I always add that stage for my clients because I have experienced it myself.
Help other people with the same diagnosis by sharing your story
Write a book
Pull back from work/toxic people
Join an organization
Take a walk every day
See the beauty of life
For me personally, finding meaning/purpose just started in November 2021 (yup, not too long ago), when I decided to participate in one of Cervivor’s Creating Connections virtual meetups. I’ve always been pretty private about my cancer diagnosis. I was terrified about this cancer, I just wanted it to go away, I did not want to share anything with anyone other than my closest family.
At this first meetup, I literally just listened to the other participants and there was so much hope, so much encouragement, and so many awesome ideas being shared for the upcoming Cervical Cancer Awareness Month (CCAM) in January, that I decided to participate in a second meetup. There, I started to introduce myself, shared a little bit of my story, and thought about ways to integrate some mental health ideas into CCAM.
Since then, I participated in Cervivor’s CCAM virtual activities and even spoke about self-care and mental health at the Cervivor Summit 2022. And today, here I am, continuing to find my meaning/ purpose.
“Cancer cannot cripple love, it cannot shatter hope, it cannot conquer the spirt.”~Author Unknown
Jessica Martin was born in Germany and holds a M.Sc. in Psychology. She moved to the USA in 2018 and was diagnosed with cervical adenocarcinoma 1B2 shortly after her move. Jessica is passionate about the mental health aspect for healing.
Today, we’re celebrating a special edition of #TealandWhiteTuesday. Our Founder and Chief Visionary, Tamika Felder is celebrating 21 years of Cervivorship!
Tamika was just 25 years old when she was diagnosed with cervical cancer on April 12, 2001. She endured a hysterectomy stripping her of her fertility, followed by chemotherapy, and radiation. Cervical cancer changed her life forever.
In 2005, she started Tamika & Friends, Inc. a nonprofit dedicated to cervical cancer survivors and their friends and family. At the time there truly wasn’t any support for cancer survivors and the Internet was just getting off the ground. Tamika needed support. She found the more she told her story, the more it reached other women. Tamika wanted to help empower others to share their stories and that’s how Cervivor was born!
But Tamika didn’t stop there. She understood her calling of living her life beyond a cervical cancer diagnosis. Over the years, she has continued to transform the lives of each person impacted by a cervical cancer diagnosis. Tamika not only empowers them to use their voice, but she teaches them that their pain can have purpose, and they have the power to create change.
Here are a few things she’s learned as she looks back on her experience with cancer:
I was a survivor from the onset of my diagnosis. Each day is survivorship. Sure, there are huge milestones. The first year, the magical number 5. But what matters is each day is another day from the one before.
No matter your faith (or lack thereof) cancer is scary. And it’s okay to be scared.
We all get by with a little help (or really a lot) when it comes to cancer from our friends/family.
You won’t ever be the same. As with any traumatic experience you are forever changed.
Accepting that cancer has changed you and living in the “new normal” means that you can move forward. Even if it’s at a slower pace.
Life is meant to be lived. And it doesn’t matter how much time. Sure, I’ve never be told that there is nothing left but what I’ve learned from others who have is that you have to live while you have life within you.
Surviving cancer doesn’t mean you have to live in a bubble. It also doesn’t mean you have to become a daredevil.
“My greatest lesson is that life comes with an expiration date — from cancer or otherwise. It matters what we do with our time here. Life continues to surprise me. I was diagnosed with cancer when I was 25. I’ll be 47 this year and life is still surprising me in the best way possible. I don’t know how many years I have left, but what I can tell you is that I am going to live in a way that says I survived cancer.”
– Tamika Felder, Founder and Chief Visionary, Cervivor
This is only asmall fraction of what Tamika has accomplished since she began her journey with cervical cancer and we couldn’t be more grateful for her resilience and leadership to create the community we now know as Cervivor. Thank you, Tamika!
Join us in celebrating Tamika’s 21 years of Cervivorship by: 1. Start living life for YOU. Don’t wait until something traumatic happens to start living life. 2. Vote for Becky’s video. People die of cancer. I’m blessed to still be here. 3. Donate $21 to Cervivor. 4. Schedule your cervical cancer screening. 5. Vaccinate your children and protect them from HPV-related cancers.
For those who don’t know me, allow me to introduce myself. My name is Morgan Newman, I’m a social worker, and I’m a Cervivor! I was diagnosed with endocervical adenocarcinoma at the age of 24 and then I was “hit” again with a metastatic recurrence to my lungs. Throughout my whole treatment, I wanted to do something more – to share my story, to advocate so others didn’t have to go through this horrible experience. I made little teal ribbons which eventually were teal and white ribbons to be more accurate and handed them out everywhere I went. I wanted everyone to know that cervical cancer existed because inside I felt all alone.
Right after I finished up my recurrence treatment, I stumbled across Cervivor due to a hashtag. I thought it was so clever to use “cervical” and “survivor.” The post mentioned a patient advocacy retreat and listed off the learning objectives of: learning the latest about HPV and cervical cancer, how to share your story, and connect with others who get it. This aligned with my values and what I wanted to accomplish. I signed up and fundraised my way to Delray Beach, Florida and the rest has been history.
I graduated Cervivor School in June of 2017 and went back home to Iowa to start working in my local area as a Cervivor Ambassador. From that stemmed SO many opportunities that have helped me grow. While attending my second Cervivor School in Cape Cod, I was recognized by the Cervivor organization and was awarded the title of Cervivor Champion. I couldn’t believe it! Me?!
For the next two years, I continued to nurture those existing community partnerships and kept on building new ones. It was then I was recognized with two more awards from two other organizations. I still couldn’t believe it and to this day I am so proud of how far I have come. This leads me into graduating from the University of Iowa with a Masters in Social Work and bound to a Code of Ethics to serve others. I was offered a position with the organization and now I really can’t believe it. I work for the organization that gave me my voice after cancer.
They say time flies when you’re having fun but really, where has the last year gone? My first year has been eye-opening yet so very rewarding. It has been a year of transition from a regular 9-5 career and volunteering in advocacy to a whole different world in the nonprofit sector.
Here are a few things I have learned along the way:
The mission is greater than just my own personal story. My passion for advocacy shifted from an individual level to an organizational mindset which is not an easy task (even for a trained social worker). These things can be presented as theories until we can actually put them into action. Sometimes we only understand something from our personal point of view and that causes us to only see a fraction of the bigger mission at hand. Our stories are powerful but they are so much more as a collective voice.
The work is hard. Even when you love your job, it can be mentally draining, exhausting, and at times…frustrating. Nonprofits are not like your regular 9-5, they come with some crazy hours including long days, nights, and weekends.
Teamwork makes the dream work. We have a creative, experienced mind and an organized, in-the-making mind. New and old ideas are able to be balanced, polished, and made into a reality.
We are a small staff but fulfilling a BIG reach. Only two of us are employed and are doing the work that other nonprofits are capable of doing with a team of 10-12 people. We are so proud of the partnerships we have been able to build on a global scale with our grassroots advocacy.
Communications are our #1 tool. I’m a generalist social worker trained in people in their environment and how systems work. I’m not someone who graduated with a specific communications or marketing degree but I’m willing to learn. I tend to bring various strengths from previous employment and life experiences to the table and it helps balance the work dynamic.
We are a community built by our community. Our community is diverse, rich in experience, and so supportive of each other. I’m really proud of all of our community members who have shared their stories, stepped up to advocate, and have extended their hands out to support others. Not to mention the individuals we’ve been able to reach thanks to our Comfort Care & Compassion Program.
Meet people where they’re at. Generally, everyone is doing the best they can at any given moment. It’s really that simple. Empathy and listening can go a long way. We see that firsthand at every Creating Connections support group meeting.
Advocates and Volunteers are everything. If no one shares their story, how can we truly make a difference? How can we put new policies and systems into place so we can continue to prevent others from going through cervical cancer, from HPV-related cancers, or worse, dying from a preventable cancer? We have the ability to be a part of that process and we have been able to accomplish so much together already. There’s so much more work left to do and we’re just getting started. Want to get involved? Sign up to become a Partner in Purpose.
Funding is crucial. Philanthropy isn’t just about giving away money. It’s about changing the world. Right now, we have over 604,000 individuals worldwide being diagnosed with cervical cancer every year with 342,000 dying from cervical cancer. Communities of color are dying at disproportionate rates and we are committed to closing the gap in cervical cancer disparities. I encourage you to consider a one-time donation to Cervivor or to become a monthly donor. There’s still so much work left to be done and we could not do what we do without your support financially.
Growth and development are everything. Always come in with an open mind and be willing to learn. Don’t assume you know everything, you’re minimizing your maximum potential. Don’t be afraid to step outside of your comfort zone.
We are far from perfect. In today’s fast-paced world, it’s insane to expect perfection (including towards yourself). You are bound to make mistakes and it’s okay. Acknowledge them, accept them, learn from them, and know we are always striving to do better than before.
Self-care is absolutely necessary to prevent burnout. Maintaining the motivation and stamina for this work with such a small team and the glaring reality of loss in our community can be difficult but the mission remains the most important thing to us and it keeps us going on a day-to-day basis. Having a passion for the cause can make it extremely difficult not to answer a message or email on your time off but it is absolutely necessary to prevent yourself from feeling exhausted, overwhelmed, emotional, and burnout. We are certainly following our 2022 campaign of Taking Care of You in 2022!
I’ve learned a lot in just a year’s time and I’m grateful for my job, to understand the work that is being done behind the scenes, to be able to sit on various advisory boards, research teams, to maintain and develop our programming, and to meet our partners and to hear their passion in the work that they do – it is all truly rewarding. Every time I am connected with someone in our community, every time I am connected to a family or friend honoring their loved one who has passed from cervical cancer, every time I see those statistics of diagnoses and cervical cancer disparities, I am reminded of just how important this work is. It keeps me humbled yet motivated for the next thing. I cannot wait to see what else the future holds for our Cervivor community and organization.
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.
Whether referring to those who are influencing medical milestones in cancer research, the women who are thriving, or our loved ones who are now in our memories and forever in our hearts, Cervivor is proud to highlight the women who share their stories, rallying fists, and expertise that help us get closer to a cure.
And to be clear, this is not the pride that interferes with faith or recognition of a higher calling; This is the delight and fulfillment that keeps us here, fighting, sharing, educating and yelling from mountaintops that we can find a cure. So during this Women’s History Month, we want to acknowledge women (who, by the way make up nearly 70% of the entire world’s healthcare workforce), and shout out five women in cancer research and healthcare – in their own words.
Padmanee Sharma, M.D., Ph.D., of the University of Texas MD Anderson Cancer Center: “I feel like we’re right on the cutting edge of discoveries that will create incredibly good outcomes for our patients with cancer … Finally, people can see that what we’ve been saying for all these years about immunotherapy is correct. But more important, we can now deliver the hope to patients that we’ve been working so hard for.”
Rosalind Franklin, British chemist whose doctoral student took the infamous “Photo 51,” that first showed the iconic double helix of DNA in 1952: “ … Science and everyday life cannot and should not be separated. Science, for me, gives a partial explanation of life. In so far as it goes, it is based on fact, experience and experiment. Your theories are those which you and many other people find easiest and pleasantest to believe, but so far as I can see, they have no foundation other than they lead [cq] to a pleasanter view of life … ” Read more.
Dr Princess Nothemba Simelela, Assistant Director-General for Strategic Programmatic Priorities: Cervical Cancer Elimination: “I’m always an optimist. When you have a life and you have opportunities, we should strive to progress and share this enthusiasm with new communities. We must use this global commitment to elimination for national action. We can make a huge contribution to the lives of women who are less privileged and advantaged than we are. And move together towards a world free of cervical cancer … The most important message that we are communicating to everybody is to take this forward together, in one united push, and to maintain the momentum.”Read more.
Helen Coley Nauts—the daughter of Dr. William B. Coley, the Father of Cancer Immunotherapy (CRI) who helped advance her father’s work despite not having a college degree or scientific training: “You must be aware that no one else but me has so far made a detailed and painstaking study of all possible aspects of this form of treatment. Until such time as you may train a person with a more impressive medical background, I would suggest that you appoint me as a sort of registrar of information on the above mentioned Toxin clearing house.”Read more of Naut’s letters chronicling her advocacy toward a new path of cancer research in the 1950s.
Dr. Lillian L. Siu, Canadian oncologist, clinician scientist and recipient of the International Women Who Conquer Cancer Mentorship Award: “All of us have family members who are affected by the disease, by cancer. There’s always going to be a personal component to most oncologists that enter the field. You have to understand something about the heart, you have to understand something about the lungs … you almost have to be a jack of all trades. That’s what intrigues me about oncology and cancer medicine. And obviously, to make a big difference in cancer is going to be very rewarding because that’s going to save a lot of lives and make a lot of difference in people’s lives.”Watch more.
In the 1970s, the White House made a concerted effort to research, educate and make gains around the prevention of cancer. President Nixon signed The National Cancer Act in 1971. State health departments began to receive grants to research ovarian cancer screenings in 1974. By 1979, the surgeon general published diet guidelines that aided in cancer prevention.
This was happening in my lifetime – well, some of it. I’m younger than I look (well, I’d like to think so), but I want to point out that while the study of cancer as an epidemic began in the 18th century, it has only been about 50 years that we’ve committed time, research, funds and our stories to help find a cure.
And there’s still work to do!
For Cervivor, cancer prevention is a daily endeavor. We host discussions, connect with cervical cancer patients and their families, and advocate for health policies. But in February, National Cancer Prevention Month, we go full force with our partners to shine a light on the need for more attention, research, and cures for the numerous cancer categories that continue to take away beautiful lives from our families, circles of friends, and networks.
Need some ideas on how to observe the month with Cervivor? We’ve got ideas but would love to hear yours too. Your voice matters in this community.
I’m passionate about using my voice to prevent not only cervical cancer but all types. Cancer in too many forms has touched my life, my parents’, immediate family, distant family, and people in my community. Cancer is a horrific thing, and I want to be a part of the movement. While we can’t prevent all cancers, cervical cancer has a first-line to prevention. I hope in the future we have more preventive ways to save people from all cancers, and I’m ecstatic to know that the White House continues to support and rally to “end cancer as we know it.”
Earlier this month on February 2, 2022, President Biden committed to reducing the death rate from cancer by at least 50% over the next 25 years. YES! He published a statement of support vowing to improve the experience of people and their families living with and surviving cancer and eradicate the disease. This commitment further propels me to do this work with our members and our partners.
In the words of President Biden this month, “It’s bold. It’s ambitious. But it’s completely doable.”
Tamika Felder is a 20-year cervical cancer survivor, an award-winning television producer, author, blogger, podcaster, mentor,motivational speaker, and nonprofit founder. By telling her story, Tamika inspired other women to start speaking about HPV and cervical cancer, which led to a network of survivors supporting each other and educating each other. From this network, Cervivor was born.
Teolita repeatedly told other women, “Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself. What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right.” She was a staunch believer that being assertive and advocating for yourself was half the battle around cervical cancer. Her mother, Nina, now carries on Teolita’s message. Teolita passed away in August 2019, after a five-year fight with stage 4 cervical cancer.
Despite the fact that cervical cancer is preventable and treatable, the National Cancer Institute (NCI) estimated that 4,290 women would die of cervical cancer in the United States in 2021. As the country observes Black History Month, it is especially poignant to recognize the fact that Black women throughout the U.S. are dying from cervical cancer at a disproportionate rate, according to a January Human Rights Watch report entitled We Need Access.
Getting to the root of health disparity
This difference, linked with social, economical or environmental disadvantage, or health disparity, is posing a major concern for Black women in the state of Georgia, like Teolita who was never screened for cervical cancer, diagnosed at a later stage, and had a lower than five-year survival rate.
While we at Cervivor are hellbent on focusing on surviving cervical cancer and thriving, we must look at the barriers, challenges and be laser-focused on the points that make some of us uncomfortable. Yes, we’re talking about economic, historic, and structural or institutional racism.
Here’s the breakdown of how Black women are impacted, disenfranchised, and disproportionately impacted:
Healthcare affordability and access
Lack of comprehensive sexual health education
Historic mistreatment of people of color, particularly Black people, by the healthcare community
HRW women’s rights researcher Annerieke Daniel, said, “We really have to look at the result of racism and discrimination in the health care field and especially looking at gynecological care, which we know is rooted in abuse and exploitation of Black people, of Black women, of Black bodies.”
How can we make a meaningful difference?
Help increase screening rates. Increasing screening rates could greatly reduce deaths from cervical cancer among Black women, Hispanic women, and other underrepresented communities. This requires the delivery of interventions directly to underserved women such as screenings based at accessible locations closer to their places of residence – such as via mobile vans and/or screening locations at local community centers instead of medical clinics. This can substantially lower cervical cancer mortality rates through early detection.
Encourage clinical trial participation.A lack of racial and ethnic diversity in both cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities, according to the American Association of Cancer Research. Clinical trials lead to the development of new interventions and new drugs. They are used to make better clinical decisions, but there is often a significant underrepresentation in clinical trials by non-White races and ethnicities. With a focus on targeted therapies and precision medicine, representation in clinical trials is increasingly important so that research includes and reflects all groups. Where to start? Share links to www.clinicaltrials.gov – where clinical trials are listed and searchable by location, disease, medicine, etc.
Gladys knows all too well the struggle of health care challenges as a Black woman. Before she was diagnosed with stage one squamous cell carcinoma in 2013, she had to demand medical attention, she said.
“I went to have my annual physical exam and requested to have a Pap smear. The physician did not want to give me one, according to the guidelines, stating that I was not required to have a Pap smear,” said Gladys. “I insisted that I have one and reluctantly, he gave me one. A few days later, the physician called to tell me that I needed to see a gynecologist. My test came back abnormal. I made an appointment to see my gynecologist. He did an exam and told me I needed to see an oncologist. The oncologist said I had stage I cervical cancer.”
The advocacy and support required is the very reason Cervivor exists. It also exists to educate everyone – whether they are diagnosed or not, whether they know someone with cancer, or not, and no matter how they identify – about cervical cancer and its prevention.
Black women helping to change the course and legacy of cervical cancer
One of those lessons includes the impact of Henrietta Lacks whose cells were used in groundbreaking cancer research. Lacks, a Black woman, was 31 when she lost her battle with cervical cancer in 1951. Despite her passing, she posthumously helped advance cancer research. Her cells, referred to in the medical field after Lacks as “HeLa” cells were cultured from her tumors, survived and multiplied outside her body thus contributing to medical breakthroughs including the development of several treatments and vaccines, including the HPV vaccines. Despite the fact that doctors did not tell Lacks’ family that her cells were being cultured, the groundbreaking effort is a notable moment in Black history.
Chellesse Parker, was diagnosed at 29 and years later is thriving. One thing she made sure of during her own journey, was to ensure her daughter is armed against cervical cancer despite the challenges facing Black women.
“There are a lot of things I can’t protect her against but this is something that I can prevent,” she said.
Research tells us that when cervical cancer is detected and treated early enough, women have a 93 percent five-year survival rate. We like these numbers and must rid ourselves of the disparate stats harshly impacting Black women. Every woman deserves to be screened, to receive equitable treatment, and to know they have a fighting chance at being a Cervivor! Let’s fight collectively to protect, prevent and prevail!
Read more about Black women cervical cancer survivors who we honor, celebrate and appreciate. For more resources on cervical cancer, awareness, and representation connect with us on our social media platforms and Cervivor.org.
I wanted to take a moment to share my love letter to the caregivers in our lives, family or chosen, who perhaps unbeknownst to them, are the ones who give us the strength to put one foot in front of the other day after day.
Cervivor Erica’s husband JR, had talked with Cervivor here about his feelings of helplessness but through his unique caregiver lens you feel that special bond that forms when a family is faced with such a life alerting shift.
Love may conquer all but that doesn’t make it less challenging or painful for caregivers. I won’t pretend to know what it’s like for my caregiving team but my husband, my children, my parents, my brother and my village do more for me than they may ever know.
After my second surgery left me with no bladder or colon, my then fiancé became my nurse. In the hospital, he recorded the Wound Care nurse demonstrating bag changes. Then at home *he* was the one who changed my poop and pee bags for months. While I screamed in frustration trying to do it on my own, he just held me and reassured me that I could do it. And eventually I did.
He also sat beside me and held my hand each time my oncologist told us of a reoccurrence or metastasis. We’ve cried together, and apart. It is exhausting and overwhelming for both of us and that’s why I’m so grateful for him.
My children, who each moment provide me with love, are who I fight so hard for. My children may be adults but that does not make this any easier. This caregiving thing wasn’t suppose to happen until I became very old. I want nothing more than to continue to be here with them to share the big and small moments life brings.
My parents and my brother, along with my chosen family, constantly support me. They are there each time I am hospitalized, they take care of our pets when we cannot, they lend a shoulder to cry on, they summon prayer warriors in my name, they have raised an insane amount of awareness and dollars for causes I care about, they never miss an opportunity to celebrate with me and they love abundantly and without hesitation.
These people, whose love touches my heart so deeply, are MY HEROES. This life would not be worth fighting for if they were not here. You give selflessly; you are my joy, my peace and my strength.
Whomever you surround yourself with during the hard times, know that their love is unconditional but they struggle with watching someone they love suffer and they want more than anything to help get you to the other side of your pain. Keep the door open for those who feel like sunshine.
A beautiful quote that sums up caregiving to me is this one…
“When you go out into the world, watch for traffic, hold hands and stick together.”
I have cancer and treatment is taking my hair. Do I have to suffer? Absolutely not! Personally, in the first few months of my cancer treatment, I surely would have liked to suffer by myself and not burden anyone by experiencing me bald and sickly. We are humans and I believe we are living to experience human emotion through connection. The saddest and most down I have felt in the past year of having cancer was when I felt alone and absent of connection. So, suffering at the hand of hair loss, in my opinion is avoidable. To share how I avoided the deep hurt from losing my hair, connect with me and join in on the journey of near waist length blond locks to bare, bald, and beautiful.
I am a cosmetologist by trade, though I certainly prefer the title “Hair Artist.” I have been in the industry since 2010, but cut back to only styling friends and family after having the second of my two children. I entered the beauty industry to bring to surface my clients’ natural beauty, as well as highlight and enhance them. Hair has been my passion and always fascinated me from the way it grows to how we approach changing color and textures. I have had a handful of clients come to me after their chemo hair had grown out and I never thought that I would be experiencing what they had to endure. The strength they showed is completely magnified now that I am in the trenches that they had to wade through to get to that post grow out perm.
It just so happened that I was near my hometown and with my entire family when I was told that the three month post radiation/chemo scan showed residual and new spots of cancer and the new chemo I was about to start would take my hair. I sectioned my hair into eight small sections (it would have been twelve, but I was rocking an undercut), had my mom and sisters braid them, and each member of my family was able to cut one. I was very excited so the sadness that occurred took my breath away a little further with each tear. I felt the hurt in each of my family members now that my diagnosis was a lot more real to them more than my own hurt. I did not plan for heavy emotions, but I also didn’t plan for cancer. I went to a friend’s salon where she sculpted the remaining hair into a spunky alternative pixie and gave me a kick-ass pastel pink color job. I mailed the braids off to Wigs for Kids on the way.
I stripped the color every week and replaced it with whatever I had in the color cache in my garage. From soft pink to day glow neon pink. I also took that time to document and demonstrate how devastating bad shampoo and hot showers were to fashion colors. Each color lost all of its shine within a shower or two, which made stripping them with direct dye removers very easy. After neon pink I had a pastel teal. Then I started chemo. I colored it again to deepen the teal to a truer variation to more accurately depict half of the colors for cervical cancer awareness. White was out of the question at this point.
A week after that first infusion, I started seeing teal hair shed off on various surfaces. I was able to pull small amounts out when I ran my hands through it, but I had a request from a special niece to get to purple. I was scared to drag color through all of it, so I added a splash of violet to my bangs. Being able to play with my color and have that to look forward to made it easy to let it go. Possibly because by the time it started coming out, I was getting sick of the work it took to change color or keep it up.
I was in my pickup on the way to spend a weekend with my mom on a trail ride when running my hands through my hair resulted in a handful of fallout. I had another four hours on the road and keeping my hands off it was torture. I pick and I pull as I fidget, so it was incredibly difficult. We had family pictures planned a week from then and I really hoped to have hair for them. At one point on our trail ride, a friend rode up and rubbed her hand over my hair as she complimented it. All I saw was a huge chunk of my hair flying away in the wind and I kept a hat on after that.
When we got back from the ride, I decided it was time. I was tired of seeing my hair attach itself to everything but my head, and I didn’t think it would survive a much-needed washing before pictures. We headed to my sister’s house and she took photos while my husband and three year old took my brother’s terrible beard clippers to my head. It was a mess and a struggle and hilarious. I ended up pulling out the remaining strands and then going over it with his clippers. It was incredibly satisfying and this time, I didn’t feel sadness. I felt free. Our pictures turned out gorgeous and I am very happy to have done the chop before them.
That was five months ago, and I still catch myself wanting random cool hair trends I see on Instagram for an instant before I remember that one must first have hair. I do have two wigs that I was so graciously given by my infusion center’s recourse center. I rarely wear them because my head has always been so sensitive to pressure. I will endure them if an occasion calls for it, but honestly, I am much more comfortable bald. Wigs are not cheap, rightly so, as the time and talent it takes to create them is unfathomable. Some insurance does pick up the cost and there are many programs available to patients to be able to afford it.
There are more than a few options when it comes to picking out a wig. Synthetic wigs are a bit more affordable than human hair and have come leaps and bounds in appearance. Lace front and lace tops offer beautiful parts and hairlines. I prefer my lace top over the other any day, as it is much cooler and not nearly as heavy. The styles offered are infinite! I had a blast trying on some within my scope and at least one that was the furthest out of my style spectrum I could get. Curly, straight, long, short, any color under the sun, wigs are a blast! Now I don’t have to deal with the bulging of natural hair underneath. Small wins do add up, you know.
I know plenty of people who would agree that losing their hair is a huge amount of stress and suffrage. It seems to grind mud into the never-ending wounding of cancer and treatment side effects. The vast majority of women see it as a direct hit to their femininity, especially those with a diagnosis that effects their reproductive system, such as cervical cancer. Many treatment options for cervical cancer leave the patient sterilized and slingshot into menopause, like myself, diagnosed at 29. There are incredible numbers of young women navigating this hell. But your perception of this hell 100% affects how terrible it actually is. I honestly had a lot of fun losing my hair! By taking it on my terms and in my own plans helped, and it takes so much time out of my showers and getting ready not having to worry about my mop. Not everyone has accessibility to products to change their hair every week before it falls out, but I guarantee if you ask your stylist to grab the products and give you a small lesson on how to apply, they would gladly set you up. If they don’t, reach out to me at firstname.lastname@example.org. I’ve got your back!
Before I lost my hair, I heard about an organization called Bald is Beautiful and their mission to normalize women with hair loss sang to my heart. They have many resources to aid your path to being bare. I also highly recommend seeking out the resource center wherever you are receiving treatment. Local salons may also have a good idea about wig and hair replacement options in your area. I have not met a soul involved in the wig community that wasn’t completely ecstatic to help make your transition to being bald an easy one. So, whether you’re like me and bear the bare or you like to switch up your wig and hat styles every other day, know that you are gorgeous and absolutely killing it! Slay girl, slay!
Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.
When someone you care about is dealing with cancer it is hard to know what to say or do. Cancer brings on all sorts of emotions and stressors from depression to anger, to concerns about finances. Remember, cancer goes well beyond just the patient and affects friends, family, coworkers and other acquaintances. Fact is cancer can make you feel pretty low! Although no cancer journey is the same, we can all benefit from support, and sometimes it takes a village. Here are some ways to reach out and support others fighting cancer.
Meals – One of the first things I think of when I want to help support a cancer patient or a family going through a major life event is organizing meals. It’s a nice way to make life easier when times get tough. Meals don’t have to be home-cooked; restaurant delivery, snacks and gift cards work too.
Financial Support – Let’s be real, cancer is expensive! Cancer means lots of medical bills and lost time at work. A quick and simple method to raise funds for someone with cancer is to use a crowd-funding platform. There are many to choose from and they only take a few minutes to set up. Crowd funding is a great way to tell your story and rally the troops. Financial support goes a long way, even if you don’t think you need it now, you might need it later and if you don’t, you can always pay it forward.
Emotional Support – People with cancer may feel stressed and overwhelmed. Asking for help is not easy for everyone, REACH OUT!Volunteer to decorate for the holidays, grocery shop, babysit kids, start a ride sharing program to get your friend/loved on to their appointments or simply schedule time to sit and visit. Believe it or not the simple gift of TIME means a whole lot!
Another way to help someone cope with cancer is to offer encouragement.Encouraging a loved one to join a support group and to stay active can provide an emotional boost. Simple notes and cards of encouragement give a personal touch. Gift baskets, blankets, journals and books can bring comfort. A little joy and laughter provides a distraction from pain and anxiety about the future. As you can see, a little positivity goes a long way.
Patient Advocate – Advocacy is not for everyone but I’m sure we can all agree navigating insurance and the medical field can be a nightmare! Having someone on your side that acts as a patient advocate is essential. This person helps coordinate care, schedule appointments, speak with insurance companies, researches treatment options and can explain complex medical diagnoses. Whether this is a loved one, friend or professional with knowledge of the healthcare system having extra support helps the cancer patient feel empowered and reduces feelings of isolation.
You don’t have to have all the right answers or advice but being there and reaching out makes a difference. Everyone, especially cancer patients want to feel loved and cared for. So, no matter what you choose to give, know that your TIME is appreciated.
If you are a cancer patient or a caregiver, it’s okay to ask for help. We already know that cancer gave you super powers but believe me, having support makes those bad days manageable.
Mostly, cancer takes a village.
Erin is a Cervivor diagnosed in 2018. She was also a cancer caregiver to her sister who passed away in 2014 from neuroendocrine gastric carcinoma. Erin works in healthcare and is passionate about prevention and education. In her free time she enjoys art, running, spending time with her family and caring for her many farm animals. Learn more about Erin by reading her Cervivor story.
On April 2, 2018 I was diagnosed with cervical cancer stage IB2.
I remember thinking something was wrong. When I woke up in the middle of the night, I discovered I had been bleeding through the overnight protection I was using during my menstrual cycle.It was awful. I was so scared. I went through five pads in one night. I really thought I was going to bleed to death. This is when I knew something was not right.
My last normal cervical cancer screening was in 2016 when I was living in Florida. I had missed my gynecological appointment in 2017 because I had recently moved to Charlotte, North Carolina. However, that was no excuse. I am usually very proactive with my cervical cancer screenings and I never miss an exam.
I went to see my doctor on February 1, 2018 and directly told her about my menorrhagia. She seemed concerned. She immediately scheduled an ultrasound and a uterine biopsy. These both came back positive. I was feeling uneasy at this point. She suggested a hysterectomy. I felt extreme sadness.
I felt alone even though my husband was right by my side praying for me, and with me. He said, if this surgery will make you feel better, let’s do it. My prayer toGodwas Psalm 41:3 “The Lord sustains him on his sickbed; in his illness you restore him to full health”.
Even after my hysterectomy was scheduled I kept wondering, ‘why me?’ But I remembered God had a plan. So I prayed, “Lord, you are the Great Physician. Please heal me.” I truly believe in the power of prayer. My faith is very important to me and it means everything. I lean on Him in times of trouble.
March 23, 2018 was the day! The preparation went really fast. All I remember is the beach ball smell from the oxygen mask. My surgery went well according to my doctor. I woke up feeling groggy from the medicine. I went immediately into menopause. My husband stayed with me overnight at the hospital.
After I was comfortably at home, I started researching and I searched Google using “Hysterectomy Recovery Time.” Along with side effects like menopause, and a whole long list of other things, I found Cervivor. This was one day after my hysterectomy! I found women speaking openly about their journey having cervical cancer and about hysterectomies. I was quite interested.
I kept reading different survivor stories. I could see myself in all of their stories. I did not virtually meet anyone as of yet, but looked on from afar. It took me a few months before I joined my first Creating Connections gathering. I called in from my mobile phone because I wasn’t as familiar with Zoom as I am now. And I was so nervous.
I remember Tamika saying, ‘I see a phone number without a name. Does this person want to introduce themselves?’ She repeated my number out loud and I said to myself, ‘oh, that’s me!’. I spoke up and said, “I am a survivor of cervical cancer”. I think my voice cracked. I was so nervous. I also shared that I had just had surgery, went through six rounds of chemotherapy and 30 rounds of radiation.
I received so much love and kindness from these ladies. They understood me. They made me feel safe sharing what I had been through. I felt I like was not alone. Many of these women had also been through hysterectomies. I had found my people. My community.
What I have learned is I am able to tell my story and I am not afraid to do so. I had reached out to my local TV station during Cervical Cancer Awareness Month in January 2020. This was something totally outside of my comfort zone. A few days passed and my nerves got the best of me. It was the day of the interview.
During the interview I shared my diagnoses and the fear I had when I first heard the words ‘cervical cancer’. The reporter asked what treatments I had and I informed her that I had chemotherapy, radiation and a hysterectomy. The latter made me really sad because I always wanted to be a mother and still long for it someday. I shared that even though previous pap tests had been normal, I had missed my 2017 screening. I believe if I had gone to my appointment, all of this would have been prevented. I talked about the importance of not missing your cervical cancer screenings. I ended with telling others that ‘you are not alone’. This interview played an important part in helping me share my story on a larger platform. The support and love from other Cervivor community members has been wonderful. They are truly like my new family.
Some of my symptoms of cervical cancer were abnormal bleeding and heavy bleeding during menstruation. Also, bad cramps and clotting. I thought this was all normal, but as it progressed, I knew this was unusual. Today, I am four years cancer free! And I am a Cervivor advocate. Cervivor helped me find my voice, and I know the importance of making my survivorship count. I want women to know cervical cancer is preventable.
Amy Knox is a wife and patient advocate based in North Carolina, who was diagnosed with cervical cancer at age 44. She is passionate about reminding women to get screened for cervical cancer. She supports Cervivor and its mission in many ways, including being a social media influencer for the organization, as well using her faith to serve as a praying partner for those seeking that level of support. Learn more about Amy, by reading her Cervivor story here.
Caregivers are a lifeline for cancer patients. Without them, we can’t get to and from appointments and treatments, they provide warm meals or go to the store when you’re in desperate need of Gatorade. Your husband will drive to every fast food joint that you haven’t gone to in 20 years, just to try and find a hamburger that reminds you of your favorite place in Seattle, because it’s the only thing you want to eat during chemo. Caregivers aren’t always those who care for you physically, sometimes they’re thousands of miles away, but they always answer when you call or text, letting you cry “on their shoulder” or helping you through the hard times.
I’d like to give a shoutout to my main caregivers: My mom and dad, my husband Dan, and my best friend Jessica. I have so many other people who have showed up for me throughout all my treatments, but these were the ones who were my rock.
When I was first diagnosed in 2014, I was living in rural Montana and chose to have my care done at the University of Washington in Seattle, which is also where I had gone to school and lived after college. My husband and I traveled to Seattle often for appointments and so many of our friends hosted, fed, and drove us to appointments and surgeries. When I was back in Montana after a whirlwind of biopsy, IVF, and hysterectomy in Seattle, my parents came from Washington and spent the better part of six weeks driving me to six weekly chemo appointments and 25 radiation plus brachytherapy appointments. My father-in-law also came from California for a couple weeks and local friends also helped take me to appointments.
When I had my recurrence last June, those same Seattle friends came to my rescue, hosting me, Dan, and now our toddler, during the pandemic, and continued to feed us. My parents would drive two hours to watch our son during multiple procedures or full day appointments I had. When I had my tumor, kidney, and ovary removal surgery in September, our son stayed with my parents for a week while I was in the hospital. My husband worked from the hospital chair, not able to take time off as he was promoted to a different site across the country and had to finish out projects. Friends gave Dan a place to sleep and shower, and continued to feed us. When I got home, there were flowers and delicious treats sent from friends local and afar.
After the surgery I found out that they were unable to remove all the cancer and I would need to go through chemo again. My mom gave up winter in Mexico to spend it in snowy Montana taking care of me and my son for months while my husband was able to work and concentrate on his new job. My Montana friends drove me to my chemo appointments every 3 weeks, and so many of them supported me as my hair fell out, dropped off food, and would take my son for walks or help get him out of the house. My mom would make me bone broth from scratch and force me to drink Ensure on days I couldn’t eat. She kept our house clean and made us every meal.
After treatment we moved across the country for Dan’s job and we were excited to start a new adventure and put cancer behind us. Then in May I started having debilitating lower back and butt pain on the right side. My toes had started tingling at the end of February, and the tingling was moving through my foot. I ended up in the ER one night from the pain, and we did scan after scan to try and find the source. Nothing showed up on any of the scans, so I was diagnosed with radiation induced plexopathy, a rare side effect to radiation that happens to about 1% of radiation patients. Walking became harder and I noticed my right foot starting to drag a little. One morning I woke up, and my foot wouldn’t move, it was dangling off my leg like a fish on a pole. I could no longer drive as my foot wouldn’t push down on the pedals.
My best friend Jessica had planned to come out for a couple weeks to visit, and she ended up staying longer to help drive my son to and from Montessori and me to appointments. She is an occupational therapist, and guided me through working with a PT and finding things to help me get around the house and make sure I was safe. Jessica has always been there for me. She was the first one I called when I got engaged and pregnant. She was the first phone call when I found out I had cancer and she has always helped me advocate for my health and well being. I text her way too much throughout the day, and often use her as a therapist, even when I already have a therapist I talk to. She was the one who told me I needed to take time off of work and apply for short term disability as work became increasingly impossible through my pain, and soon with all my appointments that took up most of my day. When she saw what bad shape I was in, she rallied our friends to come out and help drive me to my 3-month everyday appointment plus more when my parents needed a break.
Speaking of my parents, my amazing parents suffered through Maryland’s hot and humid summer to take care of us again with my mom cooking and my dad driving me to all my appointments. I don’t think they expected needing to take care of their 36 year old daughter, but they dropped everything and came to Maryland whenever I called. And of course my husband Dan has been a huge support through all this.
So much focus is put on the cancer patient during and after treatment, but caregivers are often forgotten about. I would often tell people that I had it “easy”. Even when I was feeling horrible, I could often try and sleep through it all. Dan would have to work all day then come home and take care of our son. Having my mom stay with us to take care of me and our son was a lifeline for us, but I know it still wasn’t easy on Dan and my mom. Caregivers are an integral part of a cancer patient’s life. Without their patience, understanding, and love, going through treatment would essentially be impossible. The next time you ask a cancer patient how they’re doing, be sure to take the time to ask how their caregiver is doing as well.
Gina is a mother, wife, friend, and two time cancer survivor. She was diagnosed with stage 3 cervical adenocarcinoma in situ at age 32. Not only does Gina hope to remind women to stay on top of pap smears and get the HPV vaccine, but she wants to raise awareness about side effects from cancer, both mental and physical, that happen after treatment ends.
We have to talk about the other side of cervical cancer. The side of loss.
These are just some from our community and beyond who have died from cervical cancer. Their stories not only matter, they need to be perpetually in motion. Everything we do as an organization includes their footprint — their hope for a different future.
We met some of them from attending Cervivor Schools together, and others we got to know in virtual settings like Creating Connections and through our Facebook group I’m A Cervivor!. Some people come into our community seeking support from others who truly understand the burden of cervical cancer and others decide that patient advocacy is their calling.
It is truly our stories that connect us. These stories that we read and reread, often finding an intersection with so many of them. These stories continue to fuel us, inspire us and give us our wings, as Holly Lawson would often say.
Many of these women never hesitated in offering support to others. Each brought their own strength, humor and honesty to so many inside and outside of Cervivor. Like Grace, who found Cervivor in 2020 and was a huge presence within our virtual community. Many were also dedicated advocates who were shame resilient and knew they wanted to transform the narrative of cervical cancer.
Nothing about having or living with cervical cancer is easy and dying from it brings a great sadness that ripples through our community, leaving us devastated yet profoundly grateful for the experiences we shared. Together we find comfort and the strength to move forward with purpose.
The fact that our sisters, mothers, daughters, partners and friends continue to die from cervical cancer means our work and support is crucial. We will always remember those who sought connection, an understanding of their disease or the willingness to shine a light on cervical cancer.
Cervical cancer is the fourth most common cancer in women. In 2018, there were approximately 570,000 new cases of cervical cancer diagnosed globally and about 311,000 died from the disease. Cervivor wants to change these statistics.
By honoring these and so many other women, we make a promise to carry on their legacies in the work we do every day. Together. We will not stop.
You can always go with the first word that likely pops into your mind – POWER – but I encourage you to think outside the box a bit and go with something different…for now…
Here’s what comes up for me!
Knowledge is CONNECTION.
Anyone who is involved with Cervivor knows that connection is a huge part of “who we are.” It is through our shared experiences that we connect via social media, Cervivor events, and relationships. This connection is rooted not only in experience but also in the knowledge of those experiences and the important information that we come to learn because of it all. Information about HPV, cervical cancer, prevention. Information that, combined with connection, tends to result in “power by numbers” as a collective force of advocacy and change.
Which leads me to my next word…
Knowledge is ACTION.
I’ve seen it happen a lot – and it’s so exciting to witness. Once people have reliable and important information, they usually can’t help but DO something. Knowledge spurs action in some way or another. Whether it is action for self by scheduling exams or staying on top of screening, action for others by encouraging friends and family or sharing information, or action for the cause and greater good by sharing personal stories as an advocate and impacting change in the HPV and cervical cancer space. At Cervivor, we see this continually in our patient advocates – working hard to take the information they have to “go and do” and make an impact in so many ways.
Knowledge is PREVENTION.
Whether you’re a cervical cancer patient/survivor or not – being armed with important knowledge about HPV and cervical cancer can ultimately lead to prevention and help towards eliminating this disease that we now know is preventable. Knowing what causes cervical cancer, being up-to-date on current screening guidelines and practices, being informed about vaccination all affect the impact that this disease can have. When we’re informed, we can advocate for our own preventative health or that of a loved one. When we’re informed, we know what to look for and ask for at the physician’s office. When we’re informed, we can make decisions to reduce disease. When we’re informed we know the importance of prevention.
So now, I’ll circle back to the one “go-to” word that fills in that blank…
Knowledge is POWER.
Knowledge does lead to connection, action, and prevention – but all of those add up to POWER. Power that can save lives and impact change. As patient advocates, this informed power is a driving force of what we do, how we lead, and the change we make at Cervivor.
I’ve seen this power firsthand at Cervivor School – one of our main outreach programs that educates and trains cervical cancer patients and survivors to become patient advocates. It’s wonderful to witness so many at Cervivor School realize the impact they can have as we empower them with information and support. As patients and survivors, they realize the unique platform and influence they have. That combined with relevant information, their personal stories are perhaps the most potent force they hold.
Your turn! Knowledge is ___________.
Heather Banks is Cervivor’s Lead Advocacy Educator and recipient of the 2016 Cervivor Champion Award. As a 13-year cervical cancer survivor, she is an active advocate for HPV and cervical cancer awareness and prevention. Heather’s advocacy efforts have included testifying to the FDA in 2013 for co-testing efforts, speaking to government representatives in DC, and becoming a member of Cervivor’s Leadership Team. Heather lives in Indianapolis, Indiana where she is an Instructional Coach and Specialist at the elementary level. She loves spending time with her husband and two children; ages 16 and 13.
My name is Jodi Madsen. I am a thirty-year-old mother of two toddlers living with stage IIIC2 adenosquamos cell carcinoma of the cervix. I completed weekly chemo and daily external radiation for eight weeks in the spring of 2021 followed by four internal radiation sessions.
I started a new cocktail of chemotherapy in August 2021 consisting of Avastin, Carboplatin, and Paclitaxel every three weeks. I wanted to share what a day in the life of someone in active healing looks like, because I know how terrifying the word chemotherapy can be.
November 1, 2021
I take five tablets of 20 mg dexamethasone and try to settle in enough for my brain to allow me sleep before the medication kicks in and I am brimming with energy. I am loading steroids before the six-hour chemo infusion I have tomorrow. I then arrange my next dose on the nightstand and grab a book. My husband is snoring beside me in our queen bed at the hotel about ten minutes from my treatment center.
We made the seven hour drive to South Dakota from our home in northwestern North Dakota a few days prior to drop my toddlers off with my mom, then the seven hour drive from there to Nebraska Medicine in Omaha the day before. In an effort to forget that I had to miss Halloween with our two young boys, we got last minute tickets to Hamilton at The Orpheum. I was honestly still buzzing from the theater and probably wouldn’t have known if the steroids kicked in. Before I know it, the clock reads midnight. I set my alarm and revel in the wonderful news I was given via MyChart update from the CT scan taken earlier that day. Shrinkage and no new growth, all in barely comprehensible medical terms that would be translated to mostly English at my appointments in the morning. I stay up for at least another hour thanking everything I know as well as trying to wrap my head around what a cancer free life could possibly look like for the first time in seven months.
November 2, 2021
I am gently awakened by my husband to take my next dose. I begrudgingly welcome the constant headache brought on by the steroids. Five more tabs down the hatch and back to sleep.
Another alarm and small nudge. “Are we going out to breakfast before your 8:15 appointment? If so, we have to get moving.” Knowing roughly what time it is and the small amount of sleep I was able to get I quickly decide that we will eat at the continental breakfast downstairs. I had a book that I wanted to pass along to the resource center at the Buffet Cancer Center and bring the gal running the place, Terri, a caramel macchiato. There was an instant bond between us when she helped light a spark within me three weeks ago. She helped pick out some wigs that transformed me outside and in. I wish I could send everyone on a cancer journey to her, her light shines brightly far beyond her services and I am grateful to have stumbled upon her office because she is sincerely so wonderful. I tell everyone to seek out their treatment center’s recourse office or center, visiting adds a portion of pure happiness to my trips in for chemo. Also, obviously, they have incredible resources.
We enter Nebraska Medicine’s Buffet Cancer Center to find about 30 people waiting their turn to go through COVID prescreening. I believe we were met with a wait to calm myself and slow down the rush we were in. It is amazing what you see when you know The Universe is, in fact, conspiring for your success. In order for us to get over to see Terri, we had a lot of ground to cover quickly. We got through the screening at 8:03 a.m. and we were at Radiation Oncology in six minutes. Win! My nurse was at the reception desk and took us to get my vitals immediately. I hadn’t seen her or anyone in RadOnc since May and it was so great to catch up, even if she was very surprised to see my hair in a bob as opposed to the mid-back blonde locks she had last seen me wear. The surprise escalated when I told her it wasn’t mine and went on to update her on my current treatment status. She is one of those nurses that was, no question, destined for the job. My husband and I both grew an awesome relationship with her back in April when we saw her a few times a week for brachytherapy.
My Radiology Oncologist, Dr. Wahl, came in and answered my questions and touched on concerns about my scans. There were two lymph nodes that popped hot in my PET scan in July, one left lower cervical (in my neck) and the other along the right pelvic wall. Both showed considerable shrinkage. I knew this information already from reading MyChart, but hearing the words directly from an oncologist hit differently and we are overcome with happiness. He tells my husband and I that this is a fast reaction to chemo and they are very pleased with progress. I was granted the luxury of skipping the pelvic exam they had planned because my last one was about six weeks ago. Privacy is a luxury that I don’t really remember. Through having a cancer related to a reproductive system, telling the world about said cancer, and having kids-privacy is a mere memory.
Checked in to the infusion center and we are taken back after about 15 minutes. My platelets have been low in the past and have been dancing on the line of being too low to receive my treatment the last two times. Since our home is 10 hours away from Omaha, I had blood tests done on the base at home Friday and sent down here to find out that my new practice of being mindful, intention, and concentrating energy on raising them has worked wonders and they are high! I did not have a urine test done at the base to make sure there is not protein present and my kidneys are still doing their job, so that is priority before I can get my chemo started.
My nurse, Kelsi, comes in to ask me for more urine to send down to the lab as it was the tiniest amount short, like half a milliliter short, and gets my pretreatment drips ready. One antinausea tab, two Benadryl, more steroids, and a long term antinausea drip. As the half hour of pre-drugs is finishing up, we hear the Urine Analysis shows negative for protein and we are set to start chemo. First up, Avastin. She’s like the kicker chemo. Not necessarily the star of the show, but has been proven to aid the other two in doing their jobs. Nate has gone to grab us lunch from downstairs. The new responsibilities of the role he was flung into are executed wonderfully and more efficiently every trip we make. He arrives just before the lines start at the food court and has lunch to me before the next chemo switch.
My knight roamed the hospital halls and brought me a burger and salad that I flew through. In comes the star, Paclitaxel. Forgive me for this Benadryl induced comparison, but she is the Cady from Mean Girls in the pack. Shows promise of having good intention, and just being a cool chick. She’s here to help and is down to go the extra distance to get her job done, no matter how malicious the nature may be. Next thing you know there is a schoolwide “Come to Jesus” and she’s coincidently right there when you get hit by a bus… without hair. Did she push you? No one may ever know, but in the end, shows heart and progress no matter the crap side-effects that follows in her wake. All of the exhaustion from the rush of the day hits at once and I stash my computer and get some rest after about an hour of writing and catching my day up.
I take my time in returning to the world of consciousness as Nate does the same. Kelsi is about to switch out my chemo and start the last, Carboplatin. It is a half an hour drip and I spend the rest of my time at the infusion center scrolling and chatting my husband up while he does the same.
My port is de-accessed and we are free to go! We head to a small shop to get overwhelmed browsing books and trinkets. I spend far too long staring at their wall of books before I realize I have a meeting in half an hour. We rush back to the hotel and make it just in time.
I am settled into bed next to my snoring soulmate with a book that I have been working on finishing for entirely too long. Our suitcases and cooler are already packed up and tucked away and ready for the drive back to our boys. What a good set of days. So much laughter, some tears, an uncountable amount of relief sighs and internal celebration, great conversations, and a treatment plan that IS WORKING! The way my husband and I both approach even the smallest aspects of life has changed in about every way imaginable. We look at things through lenses we didn’t know existed a year ago, and this hardship has brought out the biggest beauties in the smallest moments. Tomorrow I will hug my kids and tell them that yes, Mommy is getting better.
Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.
A cancer diagnosis rocks your entire world! No matter where you are in life, hearing that you have any cancer is an enormous hit.
I was 26 years old in 2018 when I received my cancer diagnosis. I was working as a security officer and learning to cope with a new mental illness diagnosis from an unrelated event. I was struggling mentally, but I was also having some physical issues. I was noticing changes in my body. My periods got longer, the pain wouldn’t stop, and I went to the emergency room. The doctor told me I had an enlarged cervix during that visit and treated me with antibiotics. When I had my yearly pap test, they found a mass and wanted to do a biopsy. It was at that moment that I became full of anxiety. I was full of fear. All I heard was “cancer,” “hysterectomy,” and “no kids.” How would I manage? How would I tell my family? How would I FEEL?
Before I was diagnosed with cancer, I didn’t handle my anxiety and depression with care. I tried to avoid conversations. It wasn’t until my cancer diagnosis that I realized how important mental health is as a part of our overall well-being! My father always told me that we could never make sound decisions without a clear mind. I used that as a basis for taking care of myself. I needed my mind clear to remember appointments, to remember medicines, to communicate with my team, the people around me, and so much more. I needed a clear mind to advocate for my care.
After my cancer diagnosis, I had to deal with many different feelings. The top three were anger, sadness, and guilt. I couldn’t wrap my head around having cancer and the future of no children. I felt like I had to make decisions quickly, although I talked it through with my parents. The talks of infertility, menopause, and treatment weeks made my head spin. I almost didn’t go through with the chemo and radiation. At some points, I felt like less than a woman because I could no longer naturally reproduce and I no longer functioned the way I used to. I had a lack of libido, so sex wasn’t so appealing to me. These were some of the things I found it hard to talk about, so at times, I suffered silently.
SUPPORT & SELF-CARE
A support system is vital in finding mental/emotional stability before and after a cancer diagnosis. Most importantly, self-care is an excellent way to ensure that you find some ease in dealing with day-to-day routines. After realizing that my parents and fiancée would be there the whole way through, it eased my paranoia, and I felt empowered. I vowed to live life in the very moment and heed my tattoo to learn to accept the things I cannot change and have the courage to change the things I can, with wisdom to know the difference (Serenity prayer).
Another way I coped before/after my diagnosis was meditation for at least 15 minutes each day. I affirmed that I would be healed, proclaimed that I would find peace, and declared that I would find a way to raise awareness and do what I can to teach people around me about how important it is to care for ourselves.
I saw a therapist at least twice a week a to talk and not see judgment. It was some of the best conversations I’ve ever had. My therapist helped me make sense of a lot of my emotions. She helped me see when I would misplace my anger and got me into journaling, which is another excellent way to cope and get things off your chest.
Joining a support group also played a part in my mental health. I connected with other women who were feeling the same; they got it. I joined at least three or four different groups. They were all caring and positive. We shared our feelings, thoughts, and encouraged one another. Usually, I would not join groups like this, but they were safe spaces. It made me feel good and at peace, but sometimes I would feel guilty that I complained so much, and as it seemed some women were enduring so much more than me. Now, I understand that I don’t have to write off my pain to validate someone else’s. Empathy is real! I would advise you not to join or leave any support group that makes you feel bad or does not resonate with what you are looking for.
Although cancer can make you feel exhausted, disabled, and empty, it can also make you feel empowered, tenacious, and beautiful. Remember that you are worth it. You shouldn’t be ashamed to seek mental health advice when your anxiety or stress feels too heavy. Some fun and creative ways to help relax would be arts, coloring books, and music. Talk it out or write it down, but it is never healthy to hold it in. Also, remember that it is OKAY NOT to BE OKAY! We often think that we must be strong for everyone around us, but we don’t have to pretend that we do not need a shoulder to lean on sometimes.
Kyana is part of our Cervivor community and is a survivor of stage IIIB cervical cancer. Diagnosed at 26 years old, she found empowerment through Cervivor. Cervivor’s online groups taught her how to be more vocal about her care and spread awareness so that others are able to feel that same empowerment and advocate for themselves. Kyana shares her storyin hopes that it will teach just one person about the importance of self-advocacy and preventative care, and to eliminate stigmas.
Every January, our community commits to bringing their global voices together in unison to talk about and bring awareness to cervical cancer and what it means to be a Cervivor.
It’s Cervical Cancer Awareness Month or CCAM for short. The CCAM Planning Committee for 2022 has once again been hard at work developing a campaign that will educate, uplift and inspire many to lend their voice to our mission of ending cervical cancer.
This year is all about Taking Care of You in 2022 and we’ve packed so much into our teal & white month. We’ll touch on topics like our mental health, empowering your patient advocacy voice, cancer disparities, expert speakers in various medical and wellness fields and lots more.
Some reasons why our work is so important.
In 2018, an estimated 570,000 people globally were diagnosed with cervical cancer and about 311,000 died from this disease.
The U.S. states with the highest rates of new cervical cancer cases are Arkansas, Delaware, Kansas, Kentucky, Louisiana, Mississippi, New Mexico, Tennessee, Texas and Wyoming.
Latina/Latinx populations have the highest incidence rates of cervical cancer.
Our mission is to make sure that this month becomes the impetus for conversations about cervical cancer screenings, prevention and taking care of survivors, thrivers and those facing a cervical cancer diagnosis.
Be engaged on Cervivor’s social media channels. Share, react and comment on our content on Facebook, Instagram, Twitter, TikTok and Pinterest. Don’t forget to share, share and share some more!
Join our social media chats, Zoom events and online gatherings! There will be opportunities to connect and share!
Lastly, make a promise to yourself to actively elevate the level of awareness of cervical cancer by not being quiet or sitting on the sidelines this month. This is your opportunity to be the light, to be the educated voice to carry Cervivor’s message of ending this disease that takes far too much from us.
There may still be a global pandemic and since cervical cancer doesn’t stop, neither will we. Join us and take care of YOU in 2022!
On December 30, 2020, my life did a loop-di-loop on the magic carpet of life. I was diagnosed with stage IIB cervical cancer. This diagnosis was quite honestly shocking as I happen to be one of those people who never put off a screening of any kind, even during COVID! What led to the diagnosis?
I had only one sign. I started bleeding, which I attributed to heavy lifting and moving furniture while decorating my house for Christmas. I made an appointment with my gynecologist for the very next day and I had an internal sonogram which showed a mass of some kind. She told me to be on the safe side we would set up an MRI which I went home to schedule during my Christmas vacation.
I scheduled the MRI for very early in the day so that I could also go for a mani/pedi and visit my daughter’s new home. As I sat in the pedi chair waiting to have my nails done, my phone rang. It was the gynecologist, which surprised me, but I figured it was the day before a holiday and she wanted to talk to me before the long weekend.
She definitely surprised me when she asked if I was somewhere private I could talk. I went out to my car in pedicure flip flops in the dead of winter to hear her tell me, “It is cancer.” I did not panic. My oldest daughter had had cervical cancer five years prior to this and it was thankfully caught early and was treated. I listened to my doctor tell me to take notes, and the first thing I grabbed was an envelope from a Christmas card, and I furiously wrote notes of oncologists’ names, words like ‘dysplasia’, ‘6 cm’, radiation, and chemo. I made the split second decision to go to the oncologist my daughter had been treated by and my gynecologist told me to stay put while she called him. She called me back to tell me he would meet me on a Zoom call so I quickly ran home for this meeting. Now this oncologist is pretty well known in the area for gynecological cancers and I knew him already so I felt comfortable until we started the meeting and he stoically uttered the words, “THIS IS VERY DIFFERENT THAN YOUR DAUGHTER!”
In a matter of minutes on the second to the last day of the year, I had scheduled all my appointments with oncology, hematology and radiology. My biopsy and D&C were scheduled for a week later until my world again turned upside down.
My oncologist told me I had a rare, aggressive tumor and they wanted to switch my treatment plan to try and shrink the tumor in preparation for surgery. Of course it would be me with the rare tumor that only accounts for 5% of cervical cancer diagnoses. I know, I’m an overachiever!
I was set up to begin a Taxol/Carboplatin protocol and with cold-capping to save my hair. I went through the nine weeks like a trooper and was so happy as I suffered only minimal side effects. I was able to continue teaching (remotely because of COVID) and I stayed positive and ready for my battle. But it was short lived.
The tumor indeed shrunk, but not enough so back to the drawing board of the traditional treatment plan. I went through six rounds of Cisplatin (ironically I did lose my hair but I was advised not to cold cap this time) concurrent with radiation and Brachytherapy. Again, the tumor shrunk, but not enough which leads me to my current status — LIVING WITH CANCER. This in itself is a difficult thing to wrap ones’ head around.
In September, I began a course of Topotecan and Cisplatin. Since this would be administered for three consecutive days every 21 days, I decided to take a leave from work and the doctor highly advised it! I am so glad I am off! The side effects are not fun! I have seven days of intense pain and constipation but I am trying to deal with it by wearing a smile and a big win for me was that my latest CT scan revealed a lot of shrinkage!
My biggest lesson learned: YOU CANNOT PLAN WITH CANCER! Things are not what they seem and plans constantly change. All I know in this journey is that it’s important to go with the flow and STAY HAPPY!
Phyllis Adams is part of our Cervivor communityand a proud Jersey girl. She is an active member of our Facebook groups Survivor SlimdownandI’m A Cervivor!. Thank you for sharing your story, Phyllis!
We must talk about cervical cancer. In our community, you’ll hear stories of loss of fertility, recurrences, ostomies and so many other secondary issues because of a cervical cancer diagnosis. You’ll also hear the stories of those who are no longer with us, their stories still making an impact to prevent others from having to endure such a devastating disease. Cervivor empowers and elevates the stories of cervical cancer survivors everywhere to shine a bright light on what cervical cancer is and who it impacts.
Miss USA has been a sought-after and highly respected beauty pageant since 1952. Their mission is to reimagine pageantry, to encourage the contestants to use their voice and to give back with charitable work. Cervivor’s mission is on par. We give those diagnosed with cervical cancer a patient advocacy voice, empowering them to raise much-needed awareness for a cancer so misunderstood.
Elle Smith has been crowned the 2021 Miss USA title BUT that’s not all…She’s dedicating part of her platform to cervical cancer awareness! Not many people have chosen a platform with a history of stigma like cervical cancer has had but Elle has a deeper, more personal connection.
Elle lost her grandmother in 2015 to the devastating disease we know as cervical cancer. Someone she cared for and loved so deeply was gone and she knew she couldn’t just sit back. Elle wanted to honor her grandmother by making her grandmother’s story matter.
Elle’s decision matters so deeply to the Cervivor community. No one should have to watch their loved ones die from a preventable cancer. There were tears of joy and words of encouragement from so many in our community.
Maria Franklin shared, “Watching Miss Universe as every good Puerto Rican and pulling for Puerto Rico of course but, did you guys hear Miss USA talk about #cervicalcancer and the importance of gynecological health!!! Loved that she used this platform for it!!!”
“This is fantastic! We need more women helping us raise awareness!” said Tracy Jimenez.
“What a monumental moment to have cervical cancer awareness on a global platform. As a 20-year cervical cancer survivor and the founder of Cervivor, this is exactly the type of visibility that is needed to help us end cervical cancer. Thank you, Miss USA Elle Smith.” shared Cervivor Founder, Tamika Felder.
We are supporting Miss USA and are forever grateful that she is using her platform to help end cervical cancer. We encourage staying up-to-date on the current screening guidelines. And don’t forget to join us in January for Cervical Cancer Awareness Month (CCAM).
When my husband Keith and I married on December 30, 2010, we embraced the meaning of the three French hens as Faith, Hope and Love. I knew my life was going to change when we said our ‘I dos’ but exactly how only God held the answers.
I remember when we first met. His smile had me mesmerized as we cut a rug to a 90’s song at a local restaurant turned dance club. His face lit up as we got to know one another. I felt a warmth come over me as he reminded me of home. He was so adorable. I said to myself “I could see myself marring him.”
We both shared our love of faith on our first date. We are both believers in Christ. This is the most important quality in a man to me. We conversed about me becoming a Christian in 2002 and he being raised in a Christian home and we smiled. He shared how he grew up going to church in a small town when he was younger and that attending Sunday service and worshiping our Lord and Savior were two spiritual activities we have in common. He also shared how his big family is so important to him. His older sister loved to cook a big dinner after church on Sundays for his family of five. Our relationship grew on Faith, Hope and Love.
Eight years after we got married, I was diagnosed with cervical cancer stage 1B2. I had a hysterectomy, radiation and chemotherapy. I felt defeated. I was fatigued all the time, especially after my first round of chemotherapy. Keith was right there by my side encouraging me and praying for me everyday. He was my hope and not only that he became my caregiver. During this time, he would take me to my oncology appointments which were 30 minutes away from home. I felt so grateful and safe. I really never understood when people spoke about “their person” or my “ride or die”. Well, now I do. I don’t know what I would have done without him.
The following year, we received some more heartbreaking news. Keith was diagnosed with multiple myeloma.
We nervously waited in the emergency exam room. The doctor came in and said, “Mr. Knox it looks like you have some cancerous lesions.” We were both in shock. I seriously couldn’t believe we were going down this road again. I exhaled.
Then Keith’s journey began in October 2018 when he went through a long and difficult stem cell transplant. This is a procedure in which a patient receives healthy stem cells to replace their own. He was in the hospital for 27 days. He was very weak, had no strength and lost 32 pounds. He was given a large dose of chemotherapy which made his hair fall out. I was at the hospital by his side day and night, giving him hope by praying for him and helping him with his basic needs like walking, getting dressed and eating. I will be honest, some days were really hard. There were long nights and days where my husband wouldn’t eat, wouldn’t walk and somedays he felt like giving up.
Then God stepped in. The Physicians Assistant, Ami, who is part of the oncology team asked Keith if he wanted to go home today. He answered with a yes and we were beyond happy!
Today I continue as his caregiver, assisting with his medication and chemotherapy daily. He also has neuropathy in his feet and legs. Neuropathy is weakness or numbness and pain from nerve damage. I rub his feet with pain reliving creams. Some days are better than others. But every day is a gift that I am with him.
As a patient and caregiver I too have days where I need help. My husband helps me when I don’t feel like cooking. If I need help with doing laundry or vacuuming the house, he is the first person to say, “I got you babe” and I am the first to say, “Thank you and I love you.” This relationship has taught me it’s ok to ask for help and I try not to put pressure on myself to get everything done. It’s okay to have a day where all you do is rest or read a book. There are days both of us don’t feel like doing a dang thing. What I have learned is to be in tune to or with your partner whether it be for better or for worse!
Amy is a wife and patient advocate based in North Carolina, who was diagnosed with cervical cancer at age 44. She is passionate about reminding women to get screened for cervical cancer. She supports Cervivor and its mission in many ways, including being a social media influencer for the organization, as well using her faith to serve as a praying partner for those seeking that level of support. Learn more about Amy by reading her Cervivor story here.
After navigating a global pandemic in 2020, we knew support was needed now more than ever. The Comfort Care & Compassion Program was developed and implemented as the newest addition in Cervivor’s 2021 programming. The CCC Program provides those impacted by cervical cancer with a little extra something to help carry them through the day.
The program has three components: 1) A choice of cards with a handwritten message from survivors in our community to send a little extra support or to help celebrate exciting milestones. 2) A tote bag to support individuals facing a new or recurrent diagnosis and in active treatment for cervical cancer. 3) A custom Cervivor lapel pin to celebrate benchmark milestones.
The program was developed by a team of cervical cancer survivors who volunteered numerous hours. Get to know them in this behind-the-scenes look at The Comfort Care and Compassion Program.
Emily Hoffman, a cervical cancer survivor, 2016 Cervivor School graduate, and Cervivor Ambassador located in Iowa is our Comfort Care & Compassion Card Chair. She says, “To me, the CCC Card Program means support so that no one in the Cervivor community feels alone. The greeting cards are a way for us to celebrate the milestones together and uplift each other in difficult times.”
Emily adds, “I am proud of the success of the CCC Card Program so far. I am also thrilled to know that the cards mean as much to the recipients as they do to me when I write them. The program has already brought us closer as a community, as the cards remind us that we can lean on each other.”
Caroline Swenson, a cervical cancer survivor, 2019 Cervivor School graduate, and Cervivor Ambassador located in Wisconsin, serves as the Comfort Care & Compassion Tote Bag Chair. She expresses, “I remember very clearly when I received my cervical cancer diagnosis. I was stunned and though I was surrounded by family and friends, I still felt alone. This is why I love the Comfort, Care, and Compassion Program powered by Cervivor! Being able to reach out on behalf of our community in a way that offers those on their journey a special little nudge, a nurturing gift, that says, “Hey, we are sorry you are going through this. You’ve got this and we are here to support you.” fills my cup.”
Karen North, a cervical cancer survivor, 2019 Cervivor School graduate, and Cervivor Ambassador located in Missouri, serves as a community admin. She spends a lot of time getting to know each and every one of our community members and Karen helps with referring members to receive something special from the CCC Program. Karen says, “Being an RN, I am passionate about knowing you are cared for. The Comfort Care & Compassion Program gives me the opportunity to give all 3 aspects of comfort, care, and compassion to those that might be feeling lost, alone, stressed, you name it. I enjoy seeing how our CCC program personally impacts our community.”
We have some truly incredible community partners that have volunteered to write and decorate cards for our community. Emily talks about what it felt like opening the box of cards, “When I first saw the greeting cards, I was blown away by the thoughtfulness put into them. The cards were beautiful. Each one contained an encouraging message that was handwritten in bright colors. I unexpectedly started to tear up as I read through them! I was so moved by the support of complete strangers for our community. Even though they weren’t addressed to me, I felt like their encouraging words were meant for me. I felt loved and uplifted. So I’m excited to send these cards to our community over the coming months so that we all can feel the love and support they bring.”
Everybody has their own story and own diagnosis but there is a community of cervical cancer patients, survivors, and thrivers who are here to support you in any way they can because they “get it.”
My caregiver/fiancé. He has been there for me through so many different situations. We’ve had bumps in the road but love prevails. He fed me, bathed me, clothed me when I was too weak and gives hugs all the time. Most of all, he spoke life into me by encouraging and motivating me every single day.
My husband has been amazing through this whole thing. Spoils me rotten with anything I need, comes with me to all of my appointments, asks questions I wouldn’t even think to ask, has voluntarily taken over taxi duty for our two teenagers, and he bought me a fancy bidet toilet seat as a “Let’s kick cancer’s ass” gift. What more can I ask for??? So incredibly grateful for him.
“Caregiving often calls us to lean into love we didn’t know possible.” ~ Tia Walker
Having been on both sides – patient vs caregiver, I’ve found I prefer to give as receiving can be difficult at times. Being overwhelmed with generosity can feel difficult to live up to.
My hubby has been by my side every minute of every appointment, side effect, bad day, etc. This was him holding my hand while waiting for a brachy appointment. He’s my rock. My comforter. My best friend. And, my caregiver. I know it’s not easy for him (I myself have been a caregiver to my dad and my mom), and it’s definitely not easy for him to watch the person he vowed to love forever to be in pain. To suffer. To possibly face a future without them.
This is my baby girl. When I got diagnosed with stage 3B cervical cancer four years ago, she sold her home, packed her five children up and moved in with me. I’ve also had to have a surgery due to cancer in my lung and because the radiation had deteriorated my bones from my belly button down, I had a total hip and knee replacement.
Multiple strokes kept me in the hospital but she’s been by my side from the day that I heard, ‘you have cancer’. We get on each other’s nerves once in awhile but that’s what mothers and daughters do and at the end of the day I know she’s got my back.
She is also an amazing caregiver to her five children; a set of six year old twin girls, her seven year old boy, an 11 year old son with Asperger’s and ADHD, who was born with no rectum and had a colostomy bag for quite a few years, and a soon-to-be 13 year old daughter. I always say I’m very blessed and our house is always filled with love.
He held my hand throughout the journey and he hasn’t let go.
My hubby was always a bit of a grumpy guy but this last year he has turned into a big old softy. The day after my radical hysterectomy he, without being asked, brushed my hair for the first time ever. He works 12 hours from our home and took off a month after surgery to look after me.
This November, Cervivor has partnered with Caregiver Action Network for their national campaign #CaregiverAnd. It’s an opportunity to celebrate the identities and passions that enrich your life. Check out Caregiver Action Network’s Family Caregiver Toolbox. It’s full of great resources for every topic!
My name Kristine Bahe-Sprigler. I am half Native American and half Caucasian. When I was diagnosed with cervical cancer I had to lean on my heritage for my source of strength. It was a great reminder of the those that came before me and what it meant to have their blood run through mine.
I am from the “Zuni” Clan which is my father’s mother’s clan and “The Water Flow Together” Clan is my paternal grandfather’s clan. This is what defines me as Navajo and is determined from matrilineality.
Navajo women are the matriarch and we (all Navajo’s) introduce ourselves by clan which identifies and defines relationships between individuals and families. When you meet someone with one or more of your same clan, you become related by clan. You can also tell a region by someone’s clan.
The Navajo Nation occupies portions of Southeastern Utah, Northeastern Arizona, and Northwestern New Mexico – the capital being Window Rock, AZ.
You can find hogans on the reservation, which are primarily built from logs and mud. The door always faces East to welcome the sun each morning for wealth and good fortune. Some are used for dwellings, but others are used for ceremonial purposes and regarded as sacred.
My grandfather, Roy Begay, was part of the original 29 U.S. Marines that were recruited and served as a Navajo Code Talker in World War II. He proudly served his country and is a recipient of Congressional Medal of Honor.
My mother is of Irish, English and German heritage. She comes from a very creative line. My grandfather was a musician and played in the U.S. Army band traveling around the bases and performing. He came from a very musical family. I learned to love music by watching my grandfather play while growing up. I chose to play alto sax and piano starting in the fifth grade and played in Jazz and marching bands. My grandmother was a professional dancer traveling between New York and Cuba performing with a partner until she chose to stop dancing to start a family.
My great-great grandfather on my mothers side, George Washington Taggart, was part of the journey of the Mormon Battalion, which was comprised of about 500 Latter-Day Saints that joined the U.S. Army during the Mexican American war, which made several contributions to the settlement of the American West.
I believe my strength comes from both sides of my family. We come from a long line of warriors. I was diagnosed with stage I cervical cancer in 2012 when I was 34 years old to which I received a radical hysterectomy. The decisions leading to that were difficult and heart wrenching as I wasn’t sure our family was complete. I suffered from anxiety and depression for a few years after. Being diagnosed with cancer is difficult – it teaches you humility and vulnerability all the while showing you what strength you possess even years later.
November is Native American Heritage Month, a month dedicated to paying tribute to the ancestry and traditions of Native Americans. I would be remiss if I didn’t mention the disparities American Indian and Alaska Native women are facing with cervical cancer. According to the American Indian Cancer Foundation, American Indian and Alaska Native women are nearly twice as likely to develop cervical cancer compared to white women and four times as likely to die from it.
Those are statistics I would like to help change. Cervical cancer is preventable. I share my story to remind you to be proactive with your health. Make those uncomfortable gynecologist/prevention visits and ask about the HPV vaccination for your child(ren).
At the age of 34, Kristine was diagnosed with stage I squamous cell carcinoma. She has found healing and purpose in sharing her story and in advocacy. After her dark and lonely experience with cancer, her goal was and continues to be to empower others to be shame resilient. She became a Cervivor Ambassador after attending Cervivor School in 2016 and she is currently in her 9th year of survivorship with no evidence of disease.
On Saturday, the cancer community came together to share a unified message: Cancer Can Go Fly a Kite! And it was nothing short of amazing! There were so many beautiful photos, videos, and virtual kites shared. It reminded us of one very important message, we are always stronger together.
Cancer Screenings: We want others to understand, the global pandemic put a dramatic halt on cancer screening rates and cancer diagnoses. Though rates are climbing back up, they are still not at pre-pandemic levels and it’s a problem. We know that prevention and early detection saves lives.
Caregivers: Support those who support you. Caregivers deal with so much when a loved one is diagnosed with cancer that they often forget they need support too. We are so grateful for the caregivers in our community.
Community: Cancer can feel isolating and it can make you feel lonely but when you find your community, it can make things feel less scary. The Fort Independence Warriors in New York know all about the word community. They showed up loud and proud for #CCGFAK.
Cancer Disparities: Despite all of the improvements in technology and treatment, cancer disparities are still happening. We will continue to raise awareness on cancer disparities and share our stories to make a difference.
Global Outreach: Cancer impacts us all across the globe. We have patient advocates speaking up in Kenya, Honduras, and Saint Lucia (and many more countries) because…
Cancer remains to be the third leading cause of death after infectious and cardiovascular diseases in Kenya. Milicent and Sally use their voices to make a difference.
“So that everyone knows the importance of HPV vaccination. And to our Kenyan government to know the importance of cancer survivors – when survivors share their journey they give hope to newly diagnosed patients.” – Milicent, Kenya
“Cancer made me lose some parts of my body. Let it go fly a kite. #MakingCancerPay” – Sally, Kenya
And to change the statistics for the 56,000 women in Latin America and the Caribbean that are diagnosed with cervical cancer every year like Kadiana and Karla.
“Cancer has changed my life physically, emotionally and mentally. Although I’ve learnt to accept that I am fat and forgetful with stiff joints and many scars, cancer can go fly a kite because I am also more courageous, resilient and have a profound respect for life.” – Kadiana, Saint Lucia
“I want everyone to be able to enjoy each day, people, pets, and life. Cancer can go fly a kite and let us all live freely and healthy.” – Karla, Honduras
Survivorship: The good news is cancer deaths have declined dramatically but survivorship and quality of life matters. The number of cancer survivors is expected to increase by 31%, to 20.3 million, by 2026 and it is expected that 2 out of 3 Americans diagnosed with cancer will live at least 5 years after diagnosis.
Clinical Trials: Educating others about clinical trials because only 5% of adults with cancer will participate in them. Clinical trials are a great way to help others and gain access to the latest treatment options before they are available to everyone else.
Prevention Tips: We know prevention and early detection saves lives but what can we do to help prevent cancer? We gathered a list of helpful tips to share!
To Honor: We took the time to remember and honor those in our community who are no longer able to tell their stories. We carry their memories with us every day and find new ways to honor them.
Bernie Brennan flew a kite a kite in Ireland for her daughter, Laura Brennan. Laura was a Cervivor Ambassador and sadly, died from cervical cancer in 2019. While she was alive, she served as a Cervivor Ambassador and advocated for HPV vaccination and cancer prevention. During her short time with us, Laura made a massive impact to increase HPV vaccinations. We thank the Brennan family for sharing this day to honor Laura.
Cancer Can Go Fly a Kite is a virtual cancer awareness event to do just that – to tell people ‘why’ cancer sucks. But it’s so much more than that.
A cancer diagnosis sucks. Cancer treatment sucks. The aftermath of cancer sucks. And losing friends and loved ones sucks too.
It’s also a chance to celebrate milestones no matter where you are in your cancer experience.
Did you make it out of bed this morning? Celebrate it. Did you have a day or two without experiencing post treatment side effects? Celebrate it. Have you made it to a benchmark milestone?Let’s celebrate it together!
Do it for yourself or include your friends, family, pets, or even a group of coworkers. There’s no shame in this kite flying game!
This is an opportunity for caregivers, care team members, and community partners to show support and join forces in cancer awareness and prevention so that others do not have to stand where their loved ones, patients, and colleagues once were.
This event is in support of all cancers, not just cervical cancer. Join us in raising awareness on November 13th.
We would like to thank our generous sponsors, Rubius Therapeutics for helping make this event happen.
1 in 8 women are diagnosed with breast cancer in their lifetime and it remains to be the most common cancer amongst women in the U.S. The death rates from breast cancer have reduced due to advancements in technology and routine breast cancer screenings.
It is estimated that about 14,480 new invasive cases of cervical cancer will be diagnosed in 2021. Cervical cancer was once the most common cancer death amongst women in the U.S. Cancer death rates were reduced significantly with the use of a screening tool to detect changes in the cervix, also known as the Pap test.
Early detection and screening has saved so many of us. Can you imagine making it through one cancer diagnosis only to be given another and a different type at that? Hear from two of our Cervivor community members in their experiences with both breast and cervical cancer.
Laura shares her thoughts as a breast and cervical cancer survivor
After treatment, Laura was trying to find other advocates and advocacy resources for cervical cancer patients. She noticed there was a difference in how the treatments were carried out and in the kind of support she received between the two cancers.
“I first encountered cancer in the form of cervical cancer. The treatments were isolating, there was a lack of resources, and there was a stigma that left me feeling ashamed and not understanding why. Two years later, I was diagnosed with breast cancer. I experienced a complete 180, the treatments took place in a communal setting, pink support was everywhere, and there was no feeling of shame.”
Laura wanted to understand what she could do to help gynecologic cancer patients, specifically cervical cancer patients. She was drawn to Cervivor School as a way to dive in with trusted resources and what she found, in addition, was a sisterhood and a way to network with community partners. Since Laura attended Cervivor School Chicago in 2019, she has built community partnerships like the one with her local American Cancer Society Cancer Action Network (ACSCAN).
“My plea to everyone is to not let any screening lapse – cervical, breast, skin, colon, etc. Don’t let your guard down against cancer of any type!”
Karen, a former nurse, and breast cancer survivor gives helpful tips on navigating a diagnosis
Karen was well aware of the pink ribbon after her experience with breast cancer. She found herself asking what ribbon color represented cervical cancer after her diagnosis in 2015.
Karen recommends these helpful tips on navigating a cancer diagnosis:
First, don’t Google it. This can put you in a negative headspace right off the bat.
Get to know all of the key care team members taking care of you.
Bring a family member or friend to all of your appointments as a second set of ears. If you are not able to have someone with you due to unforeseen circumstances, ask your care team if it is okay to record your visit with your smart phone.
Bring a notebook and keep a running list of questions you may want to ask your care team between visits. This also comes in handy to keep track of side effects, medications, etc.
Don’t be afraid to ask for help!
She expresses additional things that helped her during her cancer treatment, “I went to physical therapy to regain mobility, I reached out for support to other friends that had had breast cancer – like my friend that lives in Australia. She and I would text on those nights I couldn’t sleep. I decided to see a counselor in conjunction with my psychiatrist to work through the emotional turmoil I was experiencing. With breast cancer, I didn’t feel abandoned by my friends but when I had cervical cancer, it felt different. Lastly, I continued going to my favorite place at the lake so I could connect with nature’s beauty. It really brought some peace into my life.”
The Cervivor community has again felt a great loss. Today we honor and remember Cervivor Ambassador Becky Wallace.
Becky held such kindness for everybody she met; so giving and generous of herself no matter her personal struggles, she always cheered others on.
She was fierce. A mama bear. And after finding Cervivor, she knew her existence. She wanted other mothers to know her story, and that their well-being was as important as their families. She found a home within the Cervivor community too.
We are sending our light and love to Becky’s husband Ryan, their beautiful daughters and all her family and friends.
Today is National Coming Out Day. I reflect on the different aspects of being gay, having been closeted for years, the amount of courage and fear associated with coming out, and the gain in finally being who I am and love, who my soul desires. I reflect on the years that I spent soul searching knowing that the spark was slowly lighting from within when I was given a “post-hysterectomy-oophorectomy cancer diagnosis” in 2010.
However, it was not until another seven years later that I would embark on the journey from within my soul that would actually allow me to comprehend what “truly living in my authentic life” meant.
In January 2016, my best friend, Nikki, gained her heavenly wings after a long battle against ovarian, lung, liver, bone, and brain cancers. In one of my final visits at her bedside, she said something to me that resonated so deep within my soul. She whispered to me “Promise me. Promise me you will start living. Really live life! I love you so much, friend!”
That moment was the beginning of a “shift” in my life.
I realized I owed it to myself and to my daughter to begin healing and authentically seeking who I am because I was living a life that displayed dishonesty of ones’ self to my own daughter. I didn’t want her growing up with less self value than her worth because she was afraid to chase after what her heart longs for.
While the healing process is a long road traveled, I didn’t have the support that I expected. I battled survivor guilt, anxiety, and stress from years of processing the hysterectomy oophorectomy treatment I had undergone.
I learned that a cancer caregiver can be a multitude of people in many seasons of life. While the ones who cared at my bedside post surgery were not the same caregivers helping me with accepting and loving myself while healing from past traumas.
Then I met the caregiver who completed my soul.
On October 9, 2017, I met Tara, who equally challenged and changed my life for the better in every aspect imaginable. It was the amount of wholeness and love that I knew I could not contain from the world so this led to my coming out journey.
As a cancer survivor, I undergo an annual wellness pap test and exam to ensure there is no reoccurrence. As an openly gay woman, there are challenges in finding a provider who is affirming and one that I am comfortable discussing personal aspects of my relationship with.
I say this in my sweetest mama bear voice, ladies — cancer does not discriminate. Cancer does not care about your sexual orientation or history. Regardless of your sexual orientation, you still need wellness exams and cancer screenings. Your health is important. There are many resources available to help find an LGBTQ+ affirming gynecologist.
Since coming out, I have found a new gynecologist who is LGBTQ+ affirming. It took several attempts with researching websites. While it shouldn’t matter, it does. You should feel completely safe, confident and comfortable with your gynecologist.
I have not always had a great support system. I understand the pain and anxiety associated with loss of friends and family in the coming out process, but I also know the happiness and joy in finally filling the void that was keeping me from living my authentic life.
My message to my LGBTQ+ cancer community is quite simple: Kudos to you for owning your story, stepping into your brave, embracing your chaos and breaking free from the chains of conformity to find your contentment.
I know how challenging the journey can be! Even though we travel on the same road as another person, our destination and duration are unique.
Remember, it is necessary to take a rest and exhale. Freshen up. Look in the mirror and remind yourself why you’re on this trip! Seek the adventure that your heart yearns for.
While I cannot promise the road you travel will always be easy, I can promise it is worth every step.
You are not alone, you are loved, and you are worthy! I relate to your life and I am a “safe place” to come out to for support and encouragement. Someday your journey will be someone else’s survivor guide.
Much love and light,
Cervivor community member Tina is a mother of a teenage daughter, partner, and longtime Cervivor supporter. She was diagnosed with cervical carcinoma in situ (CIS) at age 26. Her goal is to help women remember the importance of their cancer screenings regardless of their sexual orientation. She hopes to educate, inspire, andsupport women, especially in the LGBTQ+ community.
I was diagnosed with Stage II cerivcal adenocarcinoma just before Christmas in 2015, caused by HPV 16. Lots of people remember the date they heard those words. I don’t. I remember the fear, the disbelief, the questions, the pounding feeling in my head, and the instinct to run, far, far away. Just keep running away so this would never catch me.
October 5 will mark my five year anniversary of NED (no evidence of disease) diagnosis. I have been waiting for this day, this special marker in the cancer world, since I heard those three words, “You have cancer.” I imagined this day multiple times throughout the years. In my imagination it would be a day of huge celebrations, with a big party with my friends and family to commenorate this huge milestone. It would be a day where I would finally feel relief from the constant worry of recurrence. It would be the day my life went back to “normal” and I could magically turn back into the “pre-cancer-me .”
I was wrong.
This day comes with many mixed emotions for me. When I was diagnosed, I thought I would go through treatment, recover, move on and never look back. Nothing could be farther from the truth.
I went through the treatments, the chemo, the external radiation, the internal radiation. Treatments that made me so sick I couldn’t work, couldn’t take care of my children, couldn’t do simple tasks like walk up the stairs or eat a small meal. Treatments that took away my fertility and put me into menopause at age 36. I went through countless side effects, including an allergic reaction to chemo, stents being placed in both ureters, a radical hysterectomy, reconstructive bladder surgery, not to mention the daily side effects I still currently deal with. These treatments almost broke me. There were many times I wanted to give up, throw in the towel and declare cancer as the winner. It is only because of my children that I didn’t do that.
Once I had finally gotten through the treatments for cervical cancer, and hit the one year mark, I was excited. I was on the right track, moving forward. I began to get more involved with Cervivor and advocacy. I began embracing my story and sharing it with anyone who would listen. Then I got the news that I never,ever expected to hear.
I was diagnosed with pre-cancerous lesions on my vaginal wall. A new and different type of cancer, still caused by HPV. Never, not once, did I imagine I would be dealing with a second, even more rare type of pre-cancerous lesions. It hit me like a ton of bricks. And yet, with my new found support system through Cervivor, I felt I could handle it. I would do chemo again. I would change my diet and eat zero carbs and zero sugar to help curb the growth of these lesions. I was a woman on a mission and no one could stop me.
Two months later, after treatments, the lesions were gone but the relief still didn’t come. I went to each six month appointment expecting the worst. I became a basket case every six months, for the week leading up to my appointments and for the following week waiting for the results. I was basically incapacitated.
I was lucky. For the next four years I had clear exams. At my four year appointment, my oncologist told me she didn’t need to see me in six months and that I could wait a full year until my next exam. I felt like this was a huge milestone. She wasn’t worried, so I could let my guard, just a little bit.
I was wrong, again.
My five year exam revealed that once again I have lesions on my vaginal wall. This time it has wrecked me. The chemo has been very difficult, painful and exhausting. I feel like I have the flu all the time. My anxiety is through the roof, and my physical and emotional stability are precarious, at best.
And I am still coming up on five years free from cervical cancer. I have so much to be grateful for and to celebrate. I have not had a recurrence of cervical cancer, which means I most likely won’t. I have two beautiful children and a supportive, adoring husband. My family is amazing and continues to lift me up when I fall. My mom, in particular, is there whenever I need her, day or night, near or far, she is always there for me.
I am grateful for the way that cancer changed me. It gave me a new purpose in my life, I have been able to lobby with ACSCAN in both California and Washington D.C. I have met the bravest, kindest, most caring women in the world, through Cervivor. Women I never would have met, had it not been for the “exclusive club,” that we were all forced to join. I have learned that I am stronger than I ever thought possible and that my voice and my story matter. These are all things to celebrate.
And yet here I sit. Tears streaming down my face.
I am crying for what I have had to go through. For what my family, my husband and my children have had to go through. And for what we all continue to go through with this round of lesions and chemo. I am crying for the fear that I still have, and will always have, about my future. I am crying for the women I know who weren’t as lucky as I am, and didn’t get to see their five year mark. Because that’s what it boils down to. Luck. Women with the same diagnosis and treatment, and some of us survive and others do not. No one isn’t fighting as hard as they can. None of us leave anything on the table when it comes to this fight against cancer and HPV. Some of us are just lucky, and luck is a very hard thing to celebrate.
My five year cervical cancer NED anniversary is a conundrum of mixed emotions. I am both optimistic and fearful about my future. I am sad and in a constant state of sorrow for what I have had to endure, and for what others have had to endure, and for the luck of the draw. And yet, I am grateful. So, so, grateful. The amazing thing about being human is that we can hold all of these things at one time.
So, here’s to five years. In honor of my journey I ask that today you live your best life. Do something that brings you joy, hug those you are close to, and reach out to those who are far away. I ask that you please make your appointments for your Pap and HPV tests, and most of all that you vaccinate your sons and daughters against HPV.
Ana is mother of two, wife, educator and Cervivor Ambassador. She was diagnosed with cervical adenocarcinoma at age 35 and has been diagnosed twice with vaginal lesions, caused by HPV. Ana is currently finishing chemotherapy treatment for these lesions. Her goal is that no woman feels alone when they receive a cervical cancer diagnosis and that her generation be the last to to deal with HPV related cancers.
As cervical cancer survivors, we advocate to bring more awareness to cervical cancer and all gynecologic cancers. Our cancers do not have the same visibility as breast cancer but there was a time when breast cancer was not talked about, let alone celebrated.
It was the work of Nancy G. Brinker, founder of Susan G. Komen® who really changed the narrative of breast cancer and started the ‘pink revolution’. When Ms. Brinker spoke to our 2018 Cervivor School attendees, she shared with us how it was an uphill battle to bring visibility to a ‘woman’s cancer’, a taboo subject that was only whispered about. She persisted and today we see the positive outcome of her work; the glass ceiling she broke through for others to follow.
We know that we still have so much work to do to bring this kind of recognition to cervical cancer but what’s important to remember is that above and below the belt cancers all take so much away from us – breasts, reproductive organs, cervixes, vaginas, and so much more. We may struggle with redefining our womanhood and we carry our physical and emotional scars with us beyond our cancer diagnosis and treatment.
These cancers change us forever.
As women, we fight hard every day for equality; to have a seat at the table, to be heard. We should be able to look to each other for support, especially when it comes to our bodies.
We are all in the cancer club regardless of what color our awareness ribbon reflects.
Today, more than ever, is the time to come together and advocate for women’s health. Every month. Every day. We can support our breast cancer friends this month and come January, just like in September, these friends will be sharing and supporting our message of cervical cancer prevention, helping us paint the world teal and white.
Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.
National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.
We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women.
For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.
Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories.
What can we do as Cervivors?
Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)
Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors; policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage, and initiatives to expand HPV vaccination.
Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program.
Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community.
Share Cervivor content on your social media platforms. You never know who might need this information.
We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives.
Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention.
It is with our deepest sympathy we announce the passing of community member Grace Chantiam Bracci.
Grace found our organization in 2020 – the year she deemed the three C Year: Covid, Cancer, and Other Crap.
She immediately immersed herself in sharing her story.
She was willing to share in any way to prevent others from going through what she had and later continued to go through. She wanted to advocate up until her final breath.
Grace was a bright light who brought sass and humor with her to lift the heaviness the community deals with every day.
She loved admitting she was a Star Wars nerd. She made sure to tell us her wedding was scheduled for 5/4/20 but due to the pandemic she had to reschedule it.
The world seems a little dimmer today and we know Grace will be missed so dearly in this community.
One of the last things she said to us was, “Thank you to Cervivor for providing me with exactly what I needed during this last year, to let me know I wasn’t alone and supporting me through all of this.”
Our thoughts and prayers are with Grace’s son, partner, extended family and friends and our entire Cervivor community. We know how much each of you meant to her.
If you wish to assist in supporting Graces last wishes, which included her dream for Alexander to have a family visit to Disney World, the family welcomes any support via e-transfer to email@example.com.
National Nonprofit Day 2021 has come and gone. It was a day we chose to celebrate everything that Cervivor is and stands for. We shared various facts across all of our social media platforms and even highlighted leaders and voices within our community.
A Letter from Our Founder
Hello Cervivor Community!
Today is not only Teal and White Tuesday, but also National Nonprofit Day! That makes it super awesome. I love any reason to shine a light on our community and our cause. When I was diagnosed with cervical cancer, I felt like something was missing. So, I created what I wish I had. Never in my wildest dreams could I have imagined how this little idea would grow into a global community. Today, I hope you celebrate with me and take time to reflect on who we are and what we represent. I am in awe of this mighty and impactful organization.
If you are following us on social media; and if you are not, you should be! Join us all day as we share a little of our backstory and some exciting plans for the future. Also, check out one of my favorite videos that gives you an inside look into our organization. And this article from Cure Today Magazine that highlights a vow I made to the cervical cancer community.
Lastly, however you’ve come to be a part of this community, I want to take a moment and thank you for being here. We wouldn’t be where we are without you. You have my heart. If you are able, please consider making a donation or visit our Cervivor shop today.
Tamika Felder 20-Year Cervical Cancer Survivor aka #cervivor Chief Visionary, Cervivor, Inc.
Who We Are, What We Do
Cervical cancer can be isolating and can often carry a stigma. Our mission is to empower those who have been impacted by cervical cancer; to educate them with the latest facts from the cervical cancer world through our signature patient advocacy retreat Cervivor School, and to motivate them to use their voices for creating awareness to end stigma.
Voices from Our Community
Chellese shares, “Cervivor was something I didn’t know I needed. It’s really so much, I don’t even think I could put into words. It’s about the sense of community with your Cervivor sisters, having the tools you need to be a good advocate, and learning how to deal with stress. So much of what I needed was here and I’m so grateful to have had this experience.”
Kristine says, “Cervivor is a community where you don’t feel alone. It’s a safe place to ask questions and share your thoughts. We share a commonality whether we are/were diagnosed with a pre-cancerous condition, diagnosed with cervical cancer, being a caregiver, or supportive friend and it puts perspective on how precious life is and how we live through survivorship.
And Natasha states, “I will advocate for the HPV vaccine. I will provide support to the women I’ve met online who are diagnosed with cervical cancer.”
We Welcome Our Newest Program
We are so excited to be announcing the launch of our Comfort Care and Compassion Program! A cervical cancer diagnosis is devastating and has complex layers like shame and stigma attached to it. This program was developed to support those facing a cervical cancer diagnosis or a recurrence to let them know they are never alone.
The CCC Program has three components: A chemo care bag for those newly diagnosed and in active treatment; a card program with handwritten cards from cervical cancer survivors in our community, and a pin program to celebrate survivorship milestones. To find out more, please visit our website.
Support Our Work
None of this work could be possible without donations from generous donors and sponsors like you! We believe in collaborative work. We believe with our community and community partners working side-by-side that we will be able to shift the narrative on HPV and cervical cancer. We know we will increase awareness of cancer screenings and prevention, and we believe that ending cervical cancer is within our reach. Please make a donation today through our website and support our global initiative to end cervical cancer once and for all.
It is an exciting time for science and cervical cancer! There have been limited treatments for cervical cancer for several years but now we are seeing more clinical trials opening especially for metastatic and recurrent cervical cancer patients. If you have information on a clinical trial that you would like us to include, please email us at