Helpful Resources

Here at Cervivor, we know knowledge is power. That is why we’re bringing all these great resources right to your inbox! We also know that sharing is caring – you never know who will need this information.

Fertility Preservation

The Alliance for Fertility Preservation created Fertility Scout to help you find fertility preservation and other family building services quickly. 

Fertility Scout features three simple steps to connect you with healthcare and other providers that will best service your fertility and post-treatment reproductive needs:
1. SEARCH for the service and location that you need; OR search by the name of the doctor, provider, or facility.
2. SELECT the doctor, provider, or facility that you wish to connect with and view information about.
3. CONTACT the facility directly, by calling or by using the secure online form to request a consultation or send a message.

Preparation for Chemotherapy

Prepare for Surgery Heal Faster has expanded throughout the years and the author has developed a way to assist people who may feel anxious about chemotherapy. All of her work is research based and supported. If you are interested in more information, please email Dr. Lillian Walker Shelton, Ed.D.,LPC, LCPC, ACS.

Clinical Trials

A New Clinical Trial

A new clinical trial for metastatic cervical cancer has opened to evaluate the efficacy and safety of tiragolumab in combination with atezolizumab and atezolizumab monotherapy in patients with programmed death-ligand 1 (PD-L1)-positive cervical cancer (metastatic and/or recurrent).

For more information visit the study page.

Mary Crowley Cancer Research

Mary Crowley Cancer Research is a specialized clinical research center that offers access to new investigational therapies through the administration of Phase I and II clinical trials. 

  • Personalized approach to cancer research
  • Clinical trials are matched to molecular information found within each cancer patient
  • Qualified Physician Investigators add to the understanding of what drives cancer and create innovative research applications that attack these drivers
  • Patient-centric focus brings the newest clinical trial options to patients at a rapid pace

Visit their website to view current Phase I and II clinical trial opportunities.

Emotional Support/Mentorship

Imerman Angels

Are you a cancer fighter, survivor, previvor or caregiver looking for one–on–one support?

Through our unique matching process, Imerman Angels partners individuals seeking cancer support with a Mentor Angel — a cancer previvor, survivor or caregiver who has been in their shoes. These one-on-one relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. Mentor Angels can lend support and empathy while helping cancer fighters and caregivers navigate the system, determine their options and create their own support systems. Support is also provided to those who have lost someone to cancer and is looking to speak to someone who has lost someone to cancer.

The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage, at any age, living anywhere in the world. Each applicant speaks personally with a staff member of Imerman Angels and all Mentor Angels are properly screened and trained.

Financial/Every Day Living Assistance

The Samfund

The Samfund supports young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. The Fall 2021 Grant application is now open! Find out more here.

Family Reach

Family Reach is a national 501(c)(3) organization dedicated to eradicating the financial barriers that accompany a cancer diagnosis.

Patient Advocate Foundation (PAF)

Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.

Fitness

Survivor Slimdown

Staying active is a great component of self-care. Did you know we have a group for all cancer survivors? Join Survivor Slimdown to get daily fit tips, inspiration, and comradery from fellow survivors. Plus, you get to know the monthly challenges first!

Remembering Erica

Today, we’re thinking of Erica Frazier Stum on what would have been her 36th birthday. Erica served our community as our Lead Cervivor Ambassador until she died in 2018. She left a legacy of living life to the fullest despite her cervical cancer diagnosis.

Erica and her son, Wylee wrote a book together to help moms and kids process cancer and all the feelings that it brings. We’ve been gifting her book to moms as well as gifting it to cancer centers. Please feel free to join us by sharing this amazing book and in sharing your favorite memories of Erica on our social media platforms.

Purchase a copy of her book here: https://amzn.to/3dUoOpO.
Watch Erica share her story: https://youtu.be/CmskqbiTJNs.
Listen to Erica on the Podcast: https://bit.ly/3hM7gO4.
Read Erica’s story: https://cervivor.org/stories/erica/.

Cancer Health 25

Cervivor’s founder Tamika Felder has been awarded Cancer Health’s 25: Black Lives Matter for her work towards health equity. She is among a dedicated and distinguished group of recipients, all who are working tirelessly to eliminate healthcare disparities within Black communities.

We could not be more proud of Tamika’s work in this space and beyond.

Join us in congratulating Tamika and be sure to check out Cancer Health’s feature: https://www.cancerhealth.com/…/cancer-health-25-black….

A Letter To Myself

My Dear You,

Checking in see how you’re doing, Laurie but I will begin with me, lol. First, congratulations on eight years as a cervical cancer survivor! 

I have been peeking back at 2020 as some of the fog is beginning to clear. I learned so much about myself and how strong I am physical and mentally. A knee replacement started my Journey of WTF.

I had no previous knee issues until now and there was no question that I needed a new right knee. I did my research and found the best team but no one talked about the dark side, and how the pain would take me there. It sucked! It was a lot of body and mind work but I had no choice and I kept moving forward, learning how to walk again. I was so happy I could lift my knee that I started marching! My physical therapist and I laughed so hard, I can still hear her words “heel toe, heel toe”.  Physical therapy was equal parts laughing and crying.  

Then there was more crying when I was told I needed a left hip replacement. Really? WTF!

I was working so hard preparing for my knee surgery, clearing my mind and focusing on this new challenge of a hip replacement when BANG!

Literally bang. An 18-wheeler semi-truck hit me and my life forever changed. I repeated these words: I am alive. OMG I am alive and I lived through it! 

I had to start all over with my knee physical therapy, then had the hip replacement but I smiled and lived! Then the damn concussion from the accident made me so dizzy and the ringing in my ears was unbearable. I stared brain therapy. There was so much laughing and fun but the physical therapy didn’t help so I went for an MRI. 

I have a hard time with this part of 2020. The doctor tells me they found a brain tumor… WTF?? The doctor told me it’s not a big deal as it’s outside the brain and it will be a two-hour surgery. I had to do another MRI with contrast in a brain MRI machine. I was doing good and no one seemed worried. Eric went with me to the pre-op appointment and I had all my questions ready. I thought I was fully prepared but I will never forget the words I heard, “Laurie I’m so sorry to tell you the tumors are larger and growing remarkably close to your main artery. You will need two surgeries.”  I cried but you know I still asked my questions! It’s funny what I held onto from that moment; I just remember thinking how cool that a 3-D printer was going to make my new skull plate! I had six weeks to prepare my mind and body. 

Cervivor’s Cervical Cancer Summit was my life jacket in taking my power back! You never know who will touch you with a word and I received so many words that weekend!

Laurie and her brain surgery team

Medical power of attorney, medical directive, living will; I had that conversation with Eric and it was healing. I printed everything and it sat on the table. I read and re-read it again and then I laughed and I filled it out. It was so freeing. Then I went and did something crazy: I harnessed the power of Wonder Woman and got myself a Wonder Woman costume to wear into the hospital on my surgery day!

I knew no matter what happened I was going to be okay. I have never told anyone this but I kept saying “no matter what I will be okay” as I was being rolled into the operating room.  

The first surgery took a lot out of me. It took me a couple of days to regroup before the second surgery and I had to really dig deep, deeper than I have ever done before.

This drawing helped me so much it. This showed me that I could do this.

Can you believe I had four surgeries within an eight month period? I am so grateful, blessed and I am not done yet! Thank you for teaching me how to keep laughing and living!

This also helped me with my digging out and moving forward and it’s pretty cool: Fear is a noun and a verb. Noun: an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain or a threat. Verb: be afraid of someone or something as likely to be dangerous, painful or threatening.

Fear is a feeling or emotion, yeah a mind bender moment for me.

I take small steps one at a time and I keep moving forward. I have a huge team of people around me. Some I have never met but they care and worked so hard to help get me here. I say thank you daily by living my best life!

Laurie, I am so proud of you and I love you so much! I can’t wait to see what you do next!

Love & Hugs, Me

P.S. Looking forward to your next letter.

Laurie is a 2017 Cervivor School graduate, a member of the Cervivor community, and Executive Director of Cervical Cancer Colorado Connection. Her resilience is truly insurmountable! We are sending her tons of Cervivor love and support.

Reaching That First Big Milestone

Five years? How is it possible?

Five years. It seems like much longer yet it’s still so fresh in my mind. I have spent so much time processing through what happened to me – the good and the bad. Where there was darkness, there was so much beauty to equal it out. Cue the universe’s synchronicities and all the cardinal sightings.

Six years ago, I was diagnosed with cervical cancer for the first time at age 24. They found spots in my lungs after only being six months into remission. It was truly devastating! I was back in school full-time, working full-time, and trying to regain some normalcy.

But life had other plans for me.

I went through diagnostic test after diagnostic test to confirm it was cancer. Indeed, I would be facing my mortality once again. I will never forget the words my oncologist spoke to me after I received my first three treatments, “There are 7-9% of women who experience a complete interval response to treatment. You are one of those 7-9%. You don’t have any evidence of disease.”

I knew I had been given such an incredible gift and that I must not waste this second chance at life. What I didn’t expect was to find my voice as loud as I’ve made it. I stumbled across Cervivor through a hashtag on Instagram – I didn’t see this as a coincidence. I fundraised my way to Cervivor School in 2017 where I flew out to Delray Beach, Florida and learned how to use my voice in advocacy. The rest is history.

I’m still processing through many of accomplishments that I’ve experienced over the last five years including the idea that I’ve graduated three times despite my diagnosis and treatments, and that I’ve reached my first big cancerversary milestone. I’ve jumped at every Cervivor opportunity to be a part of change from cancer panel speaking opportunities to proclamation signings with Iowa’s governor for Cervical Cancer Awareness Month (January) to volunteering with the American Cancer Society Cancer Action Network (ACSCAN) to protect or improve policies related to cancer care. I also serve as a leader with Above and Beyond Cancer to make the Adolescent and Young Adult (AYA) community visible locally. Because of this work, I’ve been given three awards from Cervivor, ACSCAN, and Above and Beyond Cancer.

I know I wouldn’t be able to do this work alone, it takes a village to make a difference – to make change happen. It is exhausting and it can take a toll but it is also truly rewarding to see our impact taking place across the globe. I’ve met so many resilient and passionate advocates (along with their family members) – some are still with us while others have succumbed to their diagnoses. As a survivor and patient advocate, I had to accept and understand that this was going to be a common occurrence in our community but it didn’t make it suck any less.

However challenging this work may be, I wouldn’t trade this personal and professional growth for anything. Here’s to 5 years cancer free!

Morgan is a metastatic recurrent cervical cancer survivor, a 3x award winning patient advocate, and our Community Manager for Cervivor. She resides in Iowa with her boyfriend, Tony, their cat, Jeezy, and dachshund, Sassy. Morgan continues to advocate tirelessly in hopes her story can help others.

CervivorTV Wins Again!

Cervivor Chief Visionary Tamika Felder and music composer Pete Lacey Receive Three Telly Awards

May 25, 2021 – During a year when the world shutdown, Cervivor created a video that shows what resilience and strength look like. The song, The Will to BE, written and composed by Cervivor caregiver Pete Lacey, is the backdrop to this timeless music video featuring amazing cervical cancer survivors from around the world. This beautiful video was made in partnership with Tim Hashko, President of Steaming Kettle.

Winning Gold in Three Categories: Social Impact, Social Not for Profit and The People’s Choice

CervivorTV now holds six Telly Awards

“Winning three Telly Awards for our work on Cervivor is a testament to the brave women in our network that advocate for themselves and others affected by the disease, who are forcing conversation about the ugly nature of this often misunderstood and stigmatized form of women’s cancer,” said Tamika Felder, Founder and Chief Visionary of Cervivor. “We feel heard – our stories are being validated and celebrated out of the 12,000 entries the Telly Awards receive, which shows that people want to learn about cervical cancer, they just need someone to teach them.”

“When I saw the first cut of the video, I knew it was going to be something special. I soon recognized that my aspirational lyrics that are lived by incredibly inspirational Cervivors, would be impactful, thought provoking and healing. I’m humbled to know the world now thinks so too”, said Pete Lacey.

“We wanted to show the world that cervical cancer is not faceless. We come from all walks of life and have been affected by this horrible disease but we continue to persevere and find joy in living”, said Carol Lacey, Lead Cervivor Ambassador and Production Manager for the The Will to BE video.

Cervivor knows the power a story holds and this community did not hesitate to step up and bring a light of hope when so much of the world is struggling. We saw these women just as they are, sharing that in spite all the adversity cancer brings, life is about the small moments that bring us laughter, happiness and a sense of calm. As the rest of the world moves through a challenging pandemic, those in the Cervivor community showed us that it is possible to rise above stronger together.

About Tamika Felder

Tamika Felder is well-versed in media on both sides of the camera: she’s provided commentary to national radio shows, worked as a journalist and producer in multiple capacities, and is now in the process of making her own documentary. See this short video on her lifestyle website to see how she’s living her second chance, and read more about her experience with cervical cancer on the Cervivor website

About Cervivor

Cervivor builds a community for cervical cancer survivors, family members, educators and caregivers to advocate for HPV awareness, cervical cancer prevention, to create meaningful networks across survivors and experts in the field; and to ultimately change the future of women’s health. To learn more, visit www.cervivor.org

About Pete Lacey

Pete is an inspirational artist who has earned his reputation as a talented musician, skillful performer and composer. Pete generously donates much of the proceeds of the sale of his music to cancer fighting organizations like Cervivor. To learn more, visit www.petelacey.com.

About The Telly Awards

The Telly Awards was founded in 1979 to honor excellence in local, regional and cable television commercials with non-broadcast video and television programming added soon after. With the recent evolution and rise of digital video (web series, VR, 360 and beyond), the Telly Awards today also reflects and celebrates this exciting new era of the moving image on and offline. The Telly Awards annually showcases the best work created within television and across video, for all screens. Receiving over 12,000 entries from all 50 states and 5 continents, Telly Award winners represent work from some of the most respected advertising agencies, television stations, production companies and publishers from around the world. To learn more, visit www.tellyawards.com.

How One Cervivor Marks Important Milestones

On May 26, 2017 I found out my entire reproductive system needed to be removed when I received a cancer diagnosis over the phone: grade one endometrial cancer. The gynecologist said I would receive a call from oncology that day and that they were deeply sorry. One week prior, I’d received an acceptance letter into the accelerated MSW program. The start of that semester was not to be. I had hopes to begin the following cohort. 

Lorie’s original diagnosis

I was wheeled into surgery in July, eyes still damp from tears. Within a week of surgery, I received news that my grade one endometrial cancer was instead invasive grade two cervical cancer. Oncology apologized for the unexpected diagnosis. The tumor board suggested daily high dose pelvic radiation with concurrent weekly platinum chemo. I stood up, holding my entire post-surgery swollen abdomen and pelvis, agreed to it all, and left. I called my master’s advisor and said the treatment would continue through the beginning of winter. I found it difficult to breathe and I couldn’t hear what she said, except that she was terribly sorry. It wasn’t just the additional news of the treatment. It was the news coupled with the fact that I had already lost so much prior to this. I’d just spent a week in the hospital before my diagnosis due to severe asthma attack and had to rebuild my lungs. I had put myself through school for all my previous degrees (summa cum laude with my most recent), while co-managing a department and staff, while supporting my household which we lost to foreclosure after my partner lost his job (packing instead of going on a honeymoon) and staying with my mom months at a time to care for her after each of her falls. 

Lorie’s final diagnosis

I continued to focus on my dreams, even after my department closed to a college-wide restructure, my health deteriorated, and I lost my mother. The MSW dream wasn’t meant to be, and it was the first time in my life I couldn’t make the impossible possible for myself. I did not tolerate treatment well. In fact, the following years were spent dealing with the fallout from the radiation and now small nerve neuropathy from the cisplatin. Still, during this time, I became a cervical cancer advocate. Word got out, and I would begin to receive calls from strangers whose loved ones were at end of life. I would hold the hands of the dying after driving to their homes and hospitals. I used my adult-ed teaching and training to raise awareness and educate the community about cervical cancer.

Lorie with Bella striking their Cervi pose.

There is more on the horizon that only those closest to me know about. I am also due to have another major surgery to my abdomen soon and the level of fear is exquisite. Through everything, I am still grateful knowing that I find beauty in the lakes and the trees. Comforted, that I am a part of a community of survivors who hold space for each other. Although my actual cancerversary is November 1, the day I completed treatment, this month I remember the three words that changed my quality of life forever. 

Lorie is a three and half year cervical cancer survivor, thanks to life-changing surgery and cancer treatment. Prior to her diagnosis, Lorie worked in research, employee training and development, case management, workshop facilitating and sales. She now dedicates herself to cancer advocacy and support, community education on cancer and HPV awareness as well as elder and animal rights. Lorie is a community member of Cervivor.

“Your cervix looks different this year”

“Your cervix looks different this year,” said my primary care doctor several years ago, as she performed the pelvic exam part of my annual exam. I remember chuckling to myself, not fully grasping the severity of her comment yet. Instead, I laid on the table thinking, “How does she remember what my cervix looks like from year to year?”

My doctor referred me to a gynecologist when the exam was over. I didn’t understand, but I also didn’t ask any questions. I visited the gynecologist two days later. She performed a colposcopy and referred me to an oncologist. Two days after that, I met with the oncologist and he told me that I had stage 2B cervical cancer. What started out as a routine exam had quickly turned into a life-threatening diagnosis.

What if…? What if…? What if…?

How could I have cervical cancer? I didn’t feel sick. I had no symptoms. (Cervical cancer symptoms can include, but are not limited to, abnormal vaginal discharge, bleeding between periods, or pelvic pain during intercourse.) I went to my doctor every year for my annual well-woman exam and the results of my Pap tests always came back normal. But somehow, in the span of only one year, a 4 cm tumor had grown on my cervix. In one year, I went from having a normal Pap test result to having cancer. What a difference one year can make.

I started chemotherapy and radiation treatment to save my life. Doctors declared me cancer-free after I completed these treatments over the course of a few months. Today, I am a seven-year cervical cancer survivor. But my story could have been drastically different if I had skipped my well-woman exam that year.

What if I had used an excuse, like “I’m too busy”, to justify putting off that appointment? Or what if I had told myself that skipping one year wouldn’t hurt anything because I’m a generally healthy person? What if I had assumed my Pap test results would continue to be normal like they always had been? How much longer would my cancer have gone undetected? How far would my cancer have spread without my knowing? Would my prognosis have been different if my cancer wasn’t detected when it was? Would I even be alive today?

The importance of annual visits and cancer screenings

A cancer diagnosis is life changing. A cancer screening is lifesaving. Scheduling my annual exam saved my life. My cancer was detected early enough to be effectively treated because I went to my doctor every year.

If I had not scheduled my exam that year, my cancer would have continued to grow undetected and my life would have been at risk.

Preventative care exams are a breast exam, pelvic exam, and a Pap (and HPV) test. A Pap test looks for abnormal cells. If needed, these can be treated before they become cancerous. The HPV test looks for high-risk HPV that can cause abnormal cells. This lets your healthcare provider monitor you more closely for cell changes.. When the Pap test and HPV test are both performed during an exam, it is referred to as co-testing.

What are you waiting for?!

  • Reduce your risk for cervical cancer through screening tests, like the Pap test and HPV test.
  • Take care of yourself by scheduling your annual well-woman exam.
  • Raise awareness for cervical cancer detection and prevention by telling your family and friends to schedule their annual well-woman exams.
  • Benefit from Iowa’s Care for Yourself program, which provides free or low-cost cancer screenings for Iowans. Many other states have free or low-cost cancer screening programs too. Be sure to visit your state or county health department’s website.
  • Make a resolution to protect your health all year long.

About the Author

Emily Hoffman is a seven-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. She is a patient advocate and Cervivor Ambassador who shares her cancer story to raise awareness for cervical cancer and educate others on the importance of cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award. She is currently pursuing her certification to become a cancer registrar.

Mother’s Day When You are Struggling to Become a Mother

While Mothers Day is a beautiful day to celebrate motherhood, it can also be a difficult day; especially if you are missing your Mama or struggling to become a mother yourself. The journey to motherhood isn’t always smooth or what you may expect.

I spent six Mother’s Days wishing, more than almost anything in the world, that I was a mother. While I was thankful to celebrate my Mom, who is and always has been great Mom!, part of me was also sad; very, very sad. I mean truthfully I was sad every day for a long time, but Mother’s Day always brought it home.

You see, I have three younger sisters, spent years babysitting, and spent several years working with mothers and babies as a nurse. I’d had lots of practice. I knew without a doubt that I wanted children; being a mother was just something I always wanted to be. But at 25, I was diagnosed with cancer that immediately robbed me of my fertility.

The specialist took one look and said, “It looks like you have cervical cancer. We’ll do what we can to save your fertility.” Cancer? My fertility? I hadn’t even attempted to conceive. I thought I had time, a lot more time. But, my tumor turned out to be too large for the procedure I hoped to have. So instead, in January of 2009, I had a complicated surgery that included a hysterectomy followed by chemotherapy and radiation.  I knew I would become a mother, but I knew my journey to motherhood would no longer be a traditional one. 

After that, my journey to motherhood was a rollercoaster. It involved more heartache than I could have imagined. But, I did eventually become a mother.  We had our son, Carter, in 2014. 

After that, we thought we were done. We thought our family was complete and, to be honest, we weren’t completely sure we could survive going through it all again. But, Carter had more faith. He started doing things like pointing to an empty chair when we were at a table for 4 and saying, “someone is missing there.” We finally decided that maybe he was right. Maybe he was seeing something that we were too scared to see. Maybe we were supposed to try again. Amazingly for us our same angel of a surrogate was willing to try again. And guess what, it worked – the first time! We had our Caroline in 2019!

I am now the proud mother of two beautiful children, my Carter and my Caroline, who I wouldn’t trade for anything in the entire universe. I’m more than a little bit obsessed with them! I tend to take a lot of pictures and videos of and with my kids. And now, you know why… Although I’ve been N.E.D. (No Evidence of Disease in the cancer world) since 2009, I like my family to have the ability to look back on our love and adventures together. And, I like to share the happiness we’ve found with others.

Struggling to grow your family is difficult, no matter the circumstances. My biggest piece of advice is to remember that there is no right or wrong way to add members to your family. What is a “traditional” family today anyway? Sometimes you have to open your mind and/or get creative. For now, remember that you can be a Mother in many ways. 

If you ever want to talk to me about my journey to motherhood, please reach out. I have personal experience with fertility preservation, adoption, and surrogacy (gestational & traditional) and would love to help support you during your journey in some small way. You can find me @cervicalcancersurvivor, @infertilitysurvivor, and follow my family @crystalcoastfamily.

Sending love to all of you Mothers out there – past, present, and future. Happy Mother’s Day to you all.

Love,

Kristin

Kristin Ferree was diagnosed with cervical cancer December of 2008, at the age of 25. After treatment left her infertile, she vowed not to let cancer keep her from her dream of becoming a mother. Now a 10-year Cervivor, she lives in Morehead City, NC with her loving husband, David, two miracle babies, Carter and Caroline, a sweet rag-doll kitty, Lilley, and a snuggly puppy, Toby. She is currently taking time off from being a Family Nurse Practitioner to spend more time with her children and loving every minute of it.

Without Patient Stories, We Walk into a Firefight with a Calculator

Storytelling is powerful. Storytelling is compelling. In this age of social media, stories have evolved from words and pages to photos, memes and videos. Unfortunately, “anti-vaccination activists have weaponized stories and weaponized misinformation” and have used their stories to undermine the broader adoption of the HPV vaccine around the world.

Dr. Noel Brewer, chair of the National HPV Vaccination Roundtable, shares why patient stories are essential to combating the anti-vaccination movement.

“Antivaccine activists rely on story telling. We scientists come back with statistics and numbers. While our statistics and facts may be true, they have little power in this arena. We walk into this firefight with a calculator.”

“In the real world, statistics and data don’t hold power, except on pages of a medical journal. What matters is people and their lived experience. Having powerful stories cuts through to what matters.”

Cervivor stories can help fight against the anti-vaccination narrative.

The power of the story in the hands of Cervivor can be used to grow cervical cancer awareness and expand HPV vaccination.

“Vaccine hesitancy is one of the global threats of public health. Legislators and policymakers increasingly seem to think vaccination is waning. That isn’t true. It’s just that the few anti-vaccine people are so loud. They have an outsized voice that is dangerous to the public’s health and well-being.” Their voice can cause people to hesitate, rather than to move forward with HPV vaccinations for their daughters and sons.

In the U.S., HPV vaccination is in fact drifting upward – around 66% of teens have had at least a dose, if not the full course, Dr. Brewer reports. “This is a big accomplishment. But our goal at the National HPV Vaccination Roundtable is to reach 80% having all the recommended doses. This vaccine will save tens of thousands of lives. It’s remarkable that people say ‘no’ to a cancer vaccine. The antivaccine movement and the stories and falsehoods they share play a role in that.”

We have to make our stories as loud and compelling as the stories of the anti-vaccine activists.

Dr. Brewer’s Advice to Cervivors: Have an Elevator Speech

“One thing I would encourage survivors to do: have the elevator speech of your story. There will be many many opportunities to tell your one minute version. It is not so often you have 20 minutes, or even five minutes. But when you introduce yourself, when you meet someone, when the opportunity arises, have your one minute story. Have a few different one minute versions of the different parts of your story. Talking about your lived experience is powerful, and you can have huge impact even in a short time frame.”

In fact, Dr. Brewer many times shares some of the one minute Cervivor Story videos on the CervivorTV Youtube channel. He and his colleagues have shown Lisa Moore’s video hundreds of times, at meetings all around the world, to focus audiences on “what really matters” when they are discussing the HPV vaccine. Lisa lost her life to cervical cancer in 2017, but her story has lived on in a hugely impactful way. All of our stories can have this impact too.

Do you have your elevator speech?

What will you share?

Tap in to Cervivor’s videos, resources and trainings to shape your story, enhance your advocacy and use your voice to end cervical cancer.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV-related cancers.

Know Your Existence: Becky’s ‘Why’

Back in September 2019, I attended Cervivor School to become an ambassador. I had no idea what to expect. I consider myself to be pretty sociable but I was beyond nervous and terrified when I stepped off the plane and landed in Chicago. As I’m checking into the hotel, who is the very first person I see, Tamika Felder. Even though she was running around making sure all the behind the scene details were perfect, she still took the time to hug me (pre-covid obvi 🙄) and made me feel so welcomed. I immediately felt a sense of ease and the nerves instantly turned into excitement. 


We had the pleasure of having, Roshanda Pratt as a guest speaker and she blew me away. She had us write down our “why statement” and then from there she wanted us to come up with three words that summed up our why. Know Your Existence is mine. I wanted my advocacy to be geared towards mothers – I wanted them to know that their life and checkups are equally as important as their families. I wanted minority women, especially in the Asian culture where below-the-belt talk is something that is rarely ever discussed, to be aware and know how important their checkups with their healthcare providers are.

I wanted women to Know Their Existence matters. 


Now I am amid a cancer reoccurrence and treatment. Who would have known that my own words now resonate specifically to me this time around. Know Your Existence, Becky. Push through, fight, give it your all, be your own advocate, speak up, research, question your doctors and live in the moment… Know Your Existence


My sister-in-law had these shirts made for me shortly after I returned from Cervivor School. She planned on surprising me with them but when we found out about the reoccurrence she sprang into action and had the women in my family take photos to show their support. I always talk about my amazing army of supporters and my Cervivor sisters are part of my tribe. I didn’t discover Cervivor until a month after my radical hysterectomy in August 2018 so to have the love and support from a group of women who just get IT has been a blessing this time around too.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.

“The Fire Gets Stronger Every Day”: A Recurrence Hasn’t Stopped This Cervivor from Educating, Advocating and Story Sharing

Becky Wallace, a young mother from California, came to Cervivor School in September 2019 to learn how to fully and effectively share her story. Just two months later, she faced a cancer recurrence. Amid this devastating news, Becky has shown our community what it means to embody the “Cervivor Spark.” 

“It wasn’t meant for me to just to get cervical cancer, and wipe my hands of it and move on,” without making a meaningful difference in the story of the disease, without taking action to help prevent it for others, says Becky.

Surrounded by family and friends, Becky shaved her head as she headed into chemo. “I shaved my head on a Sunday and woke up Monday with a whole new focus and whole new mindset. Ever since, I have this new fight in me and the fire gets stronger and stronger each day. I share my story so that this doesn’t have to be your story. Cervical cancer is something that is preventable and it is my job as a mom, a wife, friend, daughter and advocate to really put it out there.” 


See our powerful video of Becky finding and sharing her Cervivor Spark. Stay tuned for an upcoming blog featuring an interview with Becky who, in the midst of chemo, recently hosted an educational event at her home, speaking about her experiences, and calling on the women in her life and in her community to keep up with screening and vaccination.  

Becky understands the power of our stories to educate and to mobilize women to take action. If you haven’t yet shared your story on Cervivor.org, add your own!

No One Prepared Me for “The After” – A (Very) Candid Look at Life After Cancer

Treatment is over. Can you breathe a sigh of relief? Maybe. For a second. But I’m here to remind you that it’s not over yet. Probably not what you wanted to hear, huh? But I’m sharing this candid advice because no one prepared me for “the after.” The after treatment. The after cancer.  And boy, did “the after” knock me on my ass.

My family, who had come to stay with me during treatment, went home. I wasn’t going to the hospital every day anymore. I was left to just go on. 

Go on? 

Go on like it didn’t happen? 

I could barely walk up a flight of stairs, let alone do a load of laundry. I could barely eat anything. All I wanted to do was close my eyes. 

My mind would spin. I’d stub my toe and somehow, I would rationalize that I had cancer in my left pinky toe and my whole foot would have to be amputated! Rational thought went right out the window. 

And the tired, the oh so very tired…

Because even though the official treatment regimen is over, the radiation keeps working and will continue to work for 6 months at least. For me, it then took another 6 months to get any resemblance of energy back.

Those first months of The After are among the hardest cause you want to ‘bounce’ back and jump back into life. You want everything to go back to normal, yet you want and need to do it all different all at the same time.  How the hell do you do that? Especially when the fatigue continues and you can barely get up off the couch (except to dart to the bathroom before you poop your pants.)

Don’t beat yourself up about it. Easy to say, hard to do, I know. My advice? Allow yourself to just be. Realize that it’s okay to not be okay. Most of all, be gentle with yourself.

Samantha, enjoying some of the creative healing of woodworking.

You have just either had your insides ripped out or got repeatedly zapped with radiation. The toll of treatment is a heavy load. Give yourself some credit. You’ve paid the price and you can now cross the bridge to life after treatment. You are on that other side, but on that other side…

The fatigue is real.

Brain fog is real.

Those hot flashes, night sweets, insomnia, vaginal dryness and memory loss is real. 

The continued bowel explosions are real.

Bladder leakage is real.

The crushing reality of infertility is real.

Also real – and sometimes, debilitating – is the fear and “scanxiety” and the questions that always lurk in the shadows of our minds:  

Is it still there? 

Did it come back? 

Will it come back? 

Every pain, every ache, every spot of blood turns your mind into rapid fire AK-47 of fear, anxiety, panic and then depression because you’re exhausted and just can’t handle anything on top of the already immensely heavy load.

Rest assured, you are not alone in any of these feelings. 

And you know what? 

It’s okay to not be okay sometimes.

I’ll say it again: it’s okay to not be okay.

A few tidbits of advice from someone who has been in “The After” for eight years and counting:

  1. If you need a little medication or talk therapy to get you through the crazy roller coaster ride of The After Life, get it! You don’t have to stay on it forever if you don’t want to, but antidepressants can help you ease some of that mind-spin so you can make some sense of what is going to be your new life. Antidepressants and therapy helped me. I was not okay, and there was no shame in that. I just needed help to realize that and get through it. 
  1. Don’t feel guilty or ashamed for taking care of your head too, now that you are done with that treatment for your physical body. It might take every ounce you have left in you to make one more appointment, to a one more doctor, for one more thing. I can tell you, it’s worth it to push yourself to make that call to see about your mental health. Not sure where to start? Your social worker at the hospital may also have a list of therapists and psychiatrists that specialize in cancer patients.
  1. Vent! Let it out! You can vent here with the Cervivor community or with friends or in a journal. I guarantee one of us can relate to how you are feeling. Those feelings have the most power over you when you keep them inside. So share them. Or write it in a journal and then burn the pages. Get it out of you!  That dread. That doom. That weight. That worry. It only has power when it’s held inside. Get it out of you and then you won’t have to carry it alone.
  1. Be gentle with yourself. My sister told me that (when I was venting to her!). I didn’t fully absorb it when she said it, but I fully believe and appreciate that advice now – so much so that I have it tattooed on my hip as a physical and spiritual reminder. It’s okay to not be okay, and to give myself a break, and give myself some credit.  Things will get better in time…and sometimes time…just needs time.

Cancer survivor Samantha is a wildlife ecologist in San Diego, CA. When she is not protecting sea birds and restoring habitat for sea ducks injured by coastal oil spills, she volunteers with Burning Man and has attended the art festival five times. Samantha encourages women undergoing cervical cancer diagnosis and treatment to start therapy well before “The After” to head off (or at least lessen) many of the emotional issues she went through. Samantha encourage women to start a conversation with the social worker at their hospital, or to visit the “find a therapist” page on psychologytoday.com.

Read Samantha’s Cervivor story.

AYA Week Reflections

As AYA Cancer Awareness Week draws closer, I am reflective on how much the AYA cancer community means to me. I recall how for two years after treatment, I didn’t even know this community existed and how today, I can’t imagine my life without it.

During my treatment in 2013, I didn’t want any part of the AYA cancer community because I didn’t want to be labeled as the girl with cancer. I did not want to be the youngest cancer patient in the radiation waiting room, or to be told yet again that treatment would be easy because I was young (by the way, it wasn’t), or to become more familiar with insurance deductibles and FMLA than someone twice my age. I just wanted my pre-cancer life back. I wanted to go on dates, to go to the state fair without the worry of being immunocompromised in a large crowd, and to be able to eat whatever I wanted without getting sick.

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I first met a fellow AYA cancer survivor two years after my treatment and it changed my life. I was no longer alone. Someone finally understood me. I had a community and I felt like I belonged for the first time in a long time. Alongside other AYA cancer patients and survivors, I was able to process what I had just gone through and I gained knowledge about what survivorship should look like. This growth gave me a sense of purpose as an AYA cancer survivor that I needed.

Today, I am a seven-year AYA cervical cancer survivor. I share my story with a lot less fear than I did five years ago because I want people to see that I am what an AYA cancer survivor looks like. I want people to know that a cancer diagnosis in your 20’s and 30’s is difficult to navigate, not only during treatment but as a survivor. I also share my story with medical professionals so that they can better understand the unique needs of the AYA cancer community. And I mentor AYA cancer patients and survivors, so they don’t feel the loneliness that I felt during and after treatment. No one should go through cancer alone.

I’ve watched the AYA cancer community grow since 2015 from a few scattered voices to one loud collective voice. This community’s advocacy and momentum has generated much needed attention and change that will impact not only our lives, but the lives of future AYA cancer patients and survivors. During AYA Cancer Awareness Week, we deserve to recognize and celebrate our community’s accomplishments.

Emily Hoffman is a seven-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 active 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. She is currently pursuing her certification to become a cancer registrar.

New Merch Alert!

We went live yesterday to let the cat out of the bag… We have new merch in the Cervivor Shop! Check out all the cute items and be sure to go get your swag, ASAP!

Cervivor Beanie Modeled by Cervical Cancer Survivor, Tracy C.

Cervivor Neck Gaiter/Hair Buff Modeled by Lead Cervivor Ambassador and Cervical Cancer Survivor, Carol L.

Cervivor Mask – Comes 3 to a Pack!

Cervivor Sportswear Hoodie – Has BOTH Chest and Arm Design on it!

Women’s V-Neck Hoodie – Acid Wash and Contrast Sleeves.

For more Cervivor Swag, visit the shop here.

Want to see something else in our shop? Send your design and product information to info@cervivor.org. If we pick your design, you will be gifted one as a thank you!

It’s time to stop leaving women behind when it comes to cervical cancer screening – USA Today

March has been a crazy busy month for Cervivor and for the visibility of cervical cancer prevention. An international awareness day! An editorial in a national newspaper! A piece of legislation introduced in Congress! As the month draws to a close, here is a recap:

An International Awareness Day

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The month kicked off with International HPV Awareness Day on March 4. The day featured online events, press conferences, webinars and more taking place around the world.

The awareness day may have come and gone, but the International Papillomavirus Society, the official sponsors of the day, have terrific posters and visuals you can download and share at any time. Their graphics can be be a great addition to your social media feeds!

An Editorial in a National Newspaper: USA Today

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Also in March, USA Today featured an editorial on the importance of cervical cancer prevention co-authored by Cervivor founder Tamika Felder and Anna Giuliano, Ph.D., the founding director of the Center for Immunization and Infection Research In Cancer at Moffitt Cancer Center. The editorial highlighted the need for more proactive screening in uninsured/underserved communities and expressed frustration at the lowering of cervical cancer screening goals in the recently-released “Healthy People 2030” national public health initiative. The editorial offered a strong call to action: 

“Decades of groundbreaking research have provided the tools to eliminate cervical cancer. Yet, every two hours a woman in the U.S. dies of this preventable cancer. It is time to stop leaving women behind and work collectively to get every woman, regardless of race, ethnicity, and socioeconomic status, up to date with cervical cancer screening. Let’s create a national goal to achieve cervical cancer elimination, a strategy for the U.S. to accomplish this goal and a revision of the Healthy People 2030 objectives.”

Share the article on your social media feeds. Make sure to highlight your personal passion for this issue and your involvement with Cervivor!

Legislation Introduced in Congress

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The “Promoting Resources to Expand Vaccination, Education and New Treatments for HPV (PREVENT HPV) Cancers Act”  was introduced in Congress in March.  Cervivor was quoted in the press release announcing the bill. This legislation would, if enacted in the future, address many of the education and health equity needs surrounding cervical cancer prevention.

Our voices and our stories and our advocacy will be important to move this bill forward. The introduction of a piece of legislation is only the start of a long chain of legislative steps that can ultimately lead to bill passage (or not). Bill passage can take years. Bills can get folded into other legislation. Bills can get debated by committee but never elevated to the House or Senate floor for a vote. In this case, the bill was sent to the U.S. House Energy and Commerce Committee, but so far, there is no companion measure over in the U.S. Senate. So there is a long road ahead… 

On the other hand, the introduction of a bill is itself a win! It means that members of Congress and their staff are paying attention to this issue, and Congressional attention can translate to media attention and enhanced media coverage. It means that there will be future conversations as the Congressional sponsors seek other co-signers and supporters. We at Cervivor, are in it for the long haul, advocating and  sharing our stories.

Hi, I’m Morgan

Hi There!

My name is Morgan Newman. I’m a metastatic recurrent cervical cancer survivor and Cervivor Ambassador located in Iowa. I am thrilled to be jumping onboard as the Community Engagement Liaison with the Cervivor team! I have been involved with Cervivor for nearly four years. Time sure has flown right on by! You see, I have been passionate about cervical cancer awareness and cancer prevention ever since I stepped foot into a Cervivor School session.

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I knew I had a voice, but I wasn’t aware of how I could amplify it to make a difference. Cervivor taught me what I needed to know, and I continued to grow with the organization. It helped me – become such a strong, informed advocate – eventually leading me into winning several awards. In 2018, Cervivor recognized me as the Cervivor Champion recipient. In 2019, I was recognized by the Iowa American Cancer Society Cancer Action Network as the Advocate of the Year and in 2020, I was awarded as Above and Beyond Cancer’s Advocate of the Year. I am truly grateful to wear these honors. For more of my cancer story, be sure to check it out here.

If you know about Cervivor, then there is no doubt in my mind that you know just how awesome the organization is. Really! I have seen this community grow and thrive since I joined in 2017. We take pride in what we do! Sure, we celebrate the big stuff, but we never forget to include the small stuff too! We focus on developing various programs and events for our community based on its current needs.

We all know how difficult last year was. Each one of us experienced some form of loss whether we acknowledged it or not. It was during our Cervical Cancer Awareness Month (CCAM) committee planning sessions this year that we really wanted to bring the focus of community and support into everything that we did. This warms my heart and drives my passion even further. I am a social worker by trade, and I can’t wait to bring my expertise to the table. I believe in the strength of a community. I believe in human rightsdiversity, and inclusion. I believe that we all have a story to tell, to be seen, to be heard, and how we, collectively, can make change happen. I know we can make it happen because we are already doing it. Ending cervical cancer is within our reach!

I welcome you to connect with me on my social media platforms. You can find me on FacebookInstagramLinkedin, and Twitter. If social media isn’t for you, contact me via email at Morgan@cervivor.org. I want to know what you like about Cervivor, what we can work on, and if you have any ideas you want to see come to fruition – Let’s make it happen! I want to hear from you!
 

Best Wishes,


Morgan Newman, BSW, MSW Candidate 2021
Cervivor
Community Engagement Liaison
& Cervivor Ambassador
2018 Cervivor Champion
2019 ACSCAN IA Advocate of the Year
2020 Above & Beyond Cancer Advocate of the Year
Read My Story Here

Walk a Mile in My Shoes

To me this is a no-brainer: when a person has a chronic medical condition that they manage every single day, it does NOT mean they are supposed to stay in bed for the rest of their lives. At the same time, it also doesn’t mean they should extend themselves to the point that they are just making their condition worse by pushing thru pain to be “tough” or “brave.”  Some conditions will get progressively worse if you don’t adjust your lifestyle and take preventative measures.

I speak from experience. I have lymphedema in both of my lower extremities. Most recently, I have been battling what we think is neuropathy. The latter is much more painful to me than the lymphedema, but I’m not even sure what is what when it comes to the pain. All I know is that it hurts terribly.

I enjoy walking. That is one of my favorite stress relievers and a way that I stay physically fit. Gaining weight is very bad for my lymphedema so I try to stay moving, even if they are short now because of pain. Still, I do many things to keep myself smiling and positive because if you don’t have your mental health at the end of the day, what do you have?

Anyone that battles lymphedema or neuropathy knows it is a constant balance between sitting and standing. When I’m having a “bad day” my medical paperwork says I’m supposed to only work for four hours a day, three days a week. If I’m having a “really bad flare up,” I am supposed to keep my legs elevated all day. We all know that’s not feasible when you are trying to work every day and show up for your employer. It’s very stressful constantly trying to play catch-up and run out the door for another doctor’s appointment.

Someone made a comment to me the other day that really hurt my feelings (I cried). In short, they questioned how I could be out and about and yet still be so “sick.”  I have since processed it, and I realize that anyone that questions my pause from teaching does not know my struggles or my story. They do not know medically what is going on with me. For them to assume that I am “supposed to” stay in bed and not go on a walk or do anything fun, well that would also be detrimental to my mental health.

They are not in my shoes. They probably couldn’t even find my shoes on the shelf. If they could, they would know this:

I am constantly worried that I might have an accident because that’s what now happens sometimes because of the radiation to my bowels. It is very common among women like me who have withstood grueling treatments for cervical cancer. It’s a nasty side effect. God Bless Imodium!  Fellow Cervivors and I jokingly say that we need our own diaper bags. We can laugh about things such as bodily functions, but it doesn’t mean it’s fun or funny. It never goes away. We are just lucky to have a sense of humor about it because at the end of the day, what else can we do?

When you ask me to go boating or out to dinner, I worry that I will ruin the fun because my feet/legs will hurt and I won’t be able to even focus on the conversations around me. The pain can make me nauseous and I feel like I want to throw up. Sometimes my eyes will randomly tear up just because I’m so tired of the gig. But the gig is my life so I can’t take a vacation from myself.

When I’m trying to get to work on time, I may seem frazzled when I arrive, It’s not because I’m not trying my best. Some mornings the thought of standing hurts before I even get out of bed because I know what it’s going to feel like when I do. Sometimes I’m changing my clothes at the last minute because I had an accident as I was walking out the door. Such fun! At any random time that you are with me, I’m probably fantasizing about taking a hot bath. There’s something about chronic pain, stress, and physical exhaustion. Bad recipe.

Before you judge me (or anyone!) and try to critique me based on your idea of what a “sick person” does with their lives, try to put yourself in my shoes. You truly don’t know, unless you have lived it. Take a walk with me and let’s see what happens!  Remember, you don’t know my reality until you have actually walked a mile or two with me or next to me. This post isn’t just for my own situation, but it’s for all of us cervical cancer survivors and those with chronic pain or chronic illness who have dealt with the judgement of others.

I’m posting about this, because I’m trying to create awareness and empathy. People are beating cancer much more than they did decades ago. Yet with surviving comes long-term side effects that sometimes become progressively worse with time. Our bodies know the score. When discussing taking a break from work, a coworker said to me, “your body already made the decision for you.” She’s right. It did. And I had to take something off my plate so I could feel better physically/emotionally. I’m taking a knee right now for myself. And no, I will not be staying home in bed in a dark hole every moment of my life. I will keep on living and enjoying this life that I have fought so hard to enjoy. I am a real person and this is my life. Thank you if you are someone that understands. I love you. If you are part of my amazing tribe and you don’t feel you understand, please just ask in a supportive and loving way.

Shawna Christy, 46, was diagnosed with cervical cancer in 2005. Treatment included removal of her cervix, uterus, 1/3 of her vaginaand more. Though surgery and radiation helped her beat cancer, “the hard parts came later” – like chronic pain together with PTSD and the emotional, hormonal and spiritual challenges of being a cancer survivor. Shawna plugged into Cervivor for community and support. In 2016 she attended Cervivor School and became a Cervivor Ambassador who uses her voice and her experiences to open conversations and “change the narrative.” She lives in Ottumwa, IA and is the proud mother of daughter (Korynn, 18) and son (Kyler, 16). She is grateful for time with her besties and boyfriend, Allen. This year she is taking time off from teaching first grade to focus on her health to better manage her pain.

Read Shawna’s Cervivor Story or her previous blog “Cerviving with Lymphedema

See other Cervivor blog posts about lymphedema: “My Under Armor: Do you know about lymphedema?” by Heather Banks

My Social Work Story

Morgan and her closest friends during a “night out.”

My social work story began in 2014 with a decision to go back to school. Little did I know, I was to be diagnosed with cervical cancer during my second semester. The diagnosis disrupted my life and turned it upside down. I was your typical “social” 24-year-old who loved going out with her best friends; a young professional working full-time as a dental assistant; and an ambitious nontraditional student attending school full-time.

Looking back, I really don’t know how I managed it all but in reality, I think it’s what kept me going.  I had something to look forward to in the future and helping people was my reward. Unfortunately, my cancer story didn’t end there. Nearly a year after my initial diagnosis, I was given a second cancer diagnosis. This time it was metastatic recurrent cervical cancer in my lungs. Even though the chemo was heavier and my body was impacted more, I did not quit.

Morgan cuddled up to her dog, Sassy, after a long day of classes.

I finished my treatments and graduated with my Associates in Liberal Arts just two weeks shy of entering the bachelor’s program at the University of Iowa School of Social work. I was terrified that I wasn’t going to be able to retain the information, but I proved myself wrong rather quickly. In the program, we were trained rigorously. We dove deep into the biopsychosocial aspects of humans. We were required to have a deeper knowledge in cultural competence and were faced to see our own implicit biases. After, we would process through as a cohort to understand why and have the opportunity to learn from each other.

Morgan posing with Herky on the University of Iowa Campus in Iowa City, IA.

After two years of a fast-paced program, I graduated with my Bachelor’s in Social Work. Then I immediately entered the Master’s program with the University of Iowa School of Social Work. When I started the program, I had the passion to be a medical oncology social worker. I wanted the opportunity to work with cancer patients and their families. I wanted to give back after getting through my own experience, however, after being in a macro-level program, it shifted my mindset on how I could still work with the population of my choice while advocating and creating change in the cancer community.

            It’s no secret that I fell in love with advocacy and what it is on a day-to-day basis. You see, I found Cervivor and attended a Cervivor School in the summer of 2017. I learned how to use my voice as a patient advocate and it only amplified as I became an educated social worker. It led me to becoming the 2018 Cervivor Champion Award Recipient, the 2019 Advocate of the Year for the Iowa American Cancer Society Cancer Action Network, and the 2020 Advocate of the Year for Above and Beyond Cancer.

After accepting the Cervivor Champion Award at the 2018 Cervivor School in Cape Copd, MA.
Volunteers with the American Cancer Society Cancer Action Network during the Iowa Day at the Hill event in 2019.
Dr. Richard Deming and Morgan filming the award segment for Above and Beyond Cancer in 2020.

My love for advocacy, cancer prevention, and macro-level social work falls right into place within the nonprofit world. We know nonprofits are vital to communities and often help build resiliency skills, raise awareness to specific issues, and make change happen. Social workers are a common thread amongst nonprofits and are community-based professionals. We assess the needs of the communities we serve, identify existing barriers, and develop sustainable programs or resources.

As I am stepping into the Community Engagement Liaison role for the organization, I look forward to serving our community. I intend to emphasize the importance of the word community and what it means to us as a whole. To listen to the needs of our community and bring support, resources, and programming to fulfill those needs. And last, but certainly not least, to continue raising awareness about our greater mission: “Ending cervical cancer is within our reach.”

Morgan is a metastatic cervical cancer survivor, Cervivor Ambassador, and a 3x award winning patient advocate. She lives in Iowa and is currently in the last two months of finishing her Masters in Social Work with the University of Iowa. She continues to advocate tirelessly in hopes her story can help others.

Remembering Holly Lawson

Today we are remembering a shining light within our community, Holly Lawson. 

Holly Lawson at Cervivor School 2017 Delray Beach, Florida

Holly elevated our Cervivor community with her fierce commitment to making sure her voice was heard. She never wavered in her advocacy and she always lifted others in the process. She connected with and inspired so many that we felt it important to share those memories today.

Holly Lawson 1978 – 2020

Holly’s Southern charm made her so likable and approachable; she naturally drew you in and captivated you with her activism towards making this world better. She worked hard to expand Cervivor’s reach, always knowing that the power of our collected stories made a difference. She mentored many in our community and always said that Cervivor gave her story ‘wings’.   

HPV Roundtable: https://cervivor.org/the-national-hpv-vaccination-roundtable-2018/

One thing Holly never shied away from was sharing the true realities of cancer and cancer side effects. She was always her authentic self and her voice and messages resonated with so many. 

“I want my story and even my pain to inspire others.” 

Holly Lawson

Holly & Dilators: https://cervivor.org/dilators-after-cervical-cancer/

Cancer Broke My Cup: https://cervivor.org/cancer-broke-my-cup/

As we take time today to remember our friend and fellow advocate, we do so with equal parts joy and sorrow. Joy for what Holly gave us while she was here. Joy for all that we carry in our hearts and in our mission. And sorrow for knowing that cervical cancer continues to take our sisters, friends, aunts, mothers, grandmothers, our loved ones.

Holly left us a legacy of inspiration and dedication to ending cervical cancer that we will carry forward. Please share your memories of Holly with us. 

Your Pap Test Came Back “Abnormal”. Now What?

Nobody looks forward to getting a Pap test, but we women get them regularly – or SHOULD get them regularly because Pap tests are crucial to preventing cervical cancer. We at Cervivor want to make sure that women understand what a Pap test does, what it is looking for and what “abnormal” results may mean. Afterall, if your Pap results came back abnormal, it is important to understand what that means and what steps to take next. 

What exactly is a Pap test?

A Pap test looks for abnormalities and precancerous cell changes in the cervix. If not treated, these abnormal cells could lead to cervical cancer.

Each year, more than 50 million Pap tests are performed in the U.S. to screen for cervical cancer. An estimated 3 million of these Pap tests (5%) are read as abnormal. In fact, approximately 20% of American women have had at least one abnormal Pap test result in their lifetimes, though in the majority of cases, the abnormal cells are the result of a bacterial or yeast infection and are not pre-cancerous or cancerous. While less than 1% of abnormal Paps result in a cervical cancer diagnosis, up to 1 million Paps find early, potentially pre-cancerous cells that can be easily removed before they progress. This is why follow-up of abnormal Pap results is critical!

Pap test results will come back to your doctor as either:

  • Normal. The cells collected from your cervix during the Pap test look like they should.
  • Unclear. If results are unclear, your doctor may do more testing right away to rule out any problems, or your doctor may have you come back in 6 months or a year for another Pap test.
  • Abnormal. The cells collected from your cervix during your Pap test look abnormal. The first thing to keep in mind: abnormal Pap test results do not mean you have precancer or cancer. Sometimes the changed cells are due bacteria or yeast. But important follow-up tests will need to be done to get more information. 

What are some of the follow-ups for abnormal Pap test results?

You may need more tests to find out if you have an HPV infection and/or to find out how severe the cell changes are. For example, your doctor may do:

  • An HPV test. Like a Pap test, an HPV test is done on a sample of cells taken from the cervix to see if the abnormalities were caused by infection with any of the types of human papillomavirus that are linked to cervical cancer
  • Another Pap test in about 6 to 12 months (“watchful waiting”).
  • A colposcopy, a test to look at the vagina and cervix through a lighted magnifying tool. 

What does a colposcopy look for?

A colposcopy is when a microscope (colposcope) with a strong light will be used to look at your cervix. Hundreds of thousands of colposcopies are performed in the U.S. each year. If any abnormal areas are identified, the doctor may take a small sample of tissue (“biopsy”)  from the cervix for closer examination. A biopsy is similar to a small pinch in terms of sensation and shouldn’t be too painful. The purpose of a biopsy is to confirm whether your screening test has been correct in identifying a problem. 

The colposcopist will usually be able to tell straight away if there are abnormal cells in your cervix, but biopsy results can take a few days to a few weeks to receive. 

Understanding the Language Used to Describe Cervical Cell Abnormalities

Treatment, if any, will depend on whether your abnormal cell changes are mild, moderate, or severe. Pap and biopsy results reports commonly use these terms to report the severity of cell changes:

  • Mild: ASC-US or ASC-H. These are changes for which the cause is unknown. ASC-US (atypical squamous cells of undetermined significance) changes usually stay the same or return to normal. ASC-H (ASC that cannot exclude high-grade squamous intraepithelial lesions) changes are also minor but have a higher likelihood of becoming more serious. 
  • Mild: LSIL (low-grade squamous intraepithelial lesions). These changes, also known as CIN 1 (cervical intraepithelial neoplasia) are mild but may be more likely to become more severe over time, though could return to normal. 
  • Moderate to Severe: HSIL and AGC: These moderate to severe cell changes require follow-up. HSIL (high-grade squamous intraepithelial lesions) and atypical glandular cells (AGC) may also be referred to as CIN II and CIN III are more likely to be precancerous and turn into cervical cancer if left untreated.
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Treatments to remove abnormal, precancerous cells:

The good news is, abnormal or precancerous cells can be removed from your cervix. Your doctor will likely recommend one of the following procedures:

  • LEEP (loop electrosurgical excision procedure): A thin, low-voltage electrified wire loop is sued to cut out abnormal cervical cells. 
  • Laser or “cold-knife” conization (also referred to as a cone biopsy): A laser or scalpel (“cold-knife”) removes a cone or cylinder-shaped piece of the cervix.
  • Laser therapy: A tiny beam of high-intensity light vaporizes and destroys abnormal cells.
  • Cryotherapy: A very cold probe freezes and destroys abnormal cells.

There is a wealth of information out there from the American College of Obstetricians & Gynecologists, from the Foundation for Women’s Cancer and of course, from Cervivor

As a community of cervical cancer survivors, we encourage you to stay calm, ask questions, and be diligent about your follow-up testing.  

A History of Impact, Yesterday and Today

As Black History Month (February) comes to a close, and Women’s History Month (March) begins, we thought we’d take a walk through history and share some key Black, female leaders in the field of medicine and cancer research. 

First Black, female physician in the U.S. 

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Rebecca Lee Crumpler, MD (1831 — 1895) worked as a nurse for eight years in Charlestown, Massachusetts.  Because this was in the 1850s, she was able to work without any formal training (keep in mind the first nursing school opened in 1873).  She was admitted to the New England Female Medical College in 1860.  She graduated a few short years later in 1864 becoming the first African American to graduate from the New England Female Medical College as well as the first Black woman to earn a medical degree.  When the Civil War ended in 1865, she moved to Richmond, VA and joined other black physicians to care for freed slaves who would otherwise have had no access to medical care. She worked with the Freedmen’s Bureau, as well as missionary and community groups, even though black physicians experienced intense racism working in the postwar South.

First Black licensed nurse

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Mary Eliza Mahoney (1845-1926) knew at a young age that she wanted to be a nurse.  She had early jobs at the New England Hospital for Women and Children, working as a janitor, cook, and washer women, then got the opportunity to work as a nurse’s aide. She applied and was admitted to the facility’s nursing school (one of the first in America) in 1878.  It is said that 42 applicants were admitted to the program and only four completed the 16-month program.  Mary was one of the four and would become known as the first Black licensed nurse.  She followed a career in private nursing due to the discrimination she faced as a public health nurse. She retired from nursing after dedicated 40 years, however, she didn’t stop advocating for equality. Mary was a Women’s Rights activist.  After the 19th Amendment was ratified, she became one of the first women to register to vote in Boston! 

Founder of the first hospital for African Americans in Atlanta

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Dr. Georgia Rooks Dwelle (1884 – 1977) attended Spelman College and in 1900 she became the school’s first graduate to go on to medical school. After completing her degree, she returned to her home state of Georgia and received the highest score on the Georgia State Medical Board examination that year. She became one of only three African American women physicians in Georgia at that time. When she settled in Atlanta, she witnessed first-hand the dire poverty and terrible conditions in which many of the city’s poorest Black residents lived and the lack of medical care they received. She was determined to set up a practice where conditions would be sanitary and proper services would be offered. Her initiative started with just a few rented rooms and grew into Atlanta’s first general hospital for African Americans, the Dwelle Infirmary.  She continued expanding services for the hospital and by 1935 had a well-baby clinic, a clinic for venereal disease, and a ‘Mother’s Club’ for African American women.  

First woman president of the New York Cancer Society

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Dr. Jane Cooke Wright (1919 – 2013) was the daughter of the first Black graduate of Harvard Medical School, Louis Tompkins Wright.  She graduated from New York Medical College in 1945 and was hired as a physician with the New York City Public Schools. She decided to work with her father, who was serving as the director of the Cancer Research Foundation at Harlem Hospital.  Chemotherapy was experimental at that time, and as a team they began testing anti-cancer chemicals and helping patients achieve some remission.  Following her father’s death in 1952, Dr. Jane Wright was appointed head of the Cancer Research Foundation, at the age of 33. She went on to become the director of cancer chemotherapy research at New York University Medical Center and was appointed to the President’s Commission on Heart Disease, Cancer, and Stroke by President Lyndon B. Johnson. In 1971, Dr. Wright became the first woman president of the New York Cancer Society. At a time when African American women physicians numbered only a few hundred in the entire United States, Dr. Wright was the highest ranked African American woman at a nationally recognized medical institution.

Making Impact Today

These trailblazers of the past helped pave the way for the trailblazers of today, such as:

At the forefront of COVID-19 vaccine development

Dr. Kizzmekia “Kizzy” Corbett is at the forefront of COVID-19 vaccine development. A viral immunologist at the Vaccine Research Center at the National Institute of Allergy and Infectious Diseases, National Institutes of Health, she is one of the leading scientists behind the government’s search for a vaccine. Corbett is part of a team at NIH that worked with Moderna, the pharmaceutical company that developed one of the two mRNA vaccines that has shown to be more than 90% effective. Today, together with her research Corbett is taking on another challenge: tempering vaccine hesitancy by talking about COVID-19 science in communities of colour.

Developing cancer therapies with lasers and nanoparticles

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Dr. Hadiyah-Nicole Green, age 42, is one of the first African American women in the nation to earn a Ph.D. in physics, holds the distinction of being only the second African American woman and the fourth African American to receive a Ph.D. in physics from the University of Alabama at Birmingham (UAB). Today, Dr. Green specializes in developing targeted cancer therapies using lasers and nanoparticles. Her expertise lies at the intersection of nanotechnology, immunotherapy, and precision medicine with a focus on developing a new cancer therapy platform that uses laser-activated nanoparticles to completely eliminate tumors after a single treatment. Beyond her academic work, she founded the Ora Lee Smith Cancer Research Foundation – named in memory of her late aunt who raised her. Dr. Green has intertwined her life’s work and professional focus into the mission of the organization: to change the way cancer is treated and reduce the suffering of cancer patients by providing a treatment that is accessible, affordable, and most importantly, effective. 

Applying computational modeling to cancer therapies

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Stacey D. Finley is a professor of biomedical engineering at the University of Southern California, where she leads the Computational Systems Biology Laboratory. She applies computational modeling to study  biologic processes that underlie cancer, such as angiogenesis, metabolism, and immunotherapy. The biochemical networks that regulate these processes involve numerous cell types, molecular species, and signaling pathways, and the dynamics occur on multiple timescales. Therefore, her systems biology approach, including experiment-based computational modeling, is required to understand these complex processes and their interconnectedness in cancer, her research website explains. Models can simulate biological processes, test interventions and  identify which tumors will respond favorably to a particular therapy, aiding in the development and optimization of effective therapeutics.

These are only just a few of the incredible Black, female medical pioneers we decided to highlight.  Let’s take a moment to celebrate these individuals and their impact.  Their legacies will carry on serving all of us for many years to come.  

Three Years Ago, a Capitol Hill Visit Pushed Me Out of My Comfort Zone

This month marks three years since my first advocacy experience with Cervivor. Three years ago, in February 2018, I  jumped completely out of my comfort zone, boarded a plane alone, and flew to Washington DC to meet up with a group of women I’d never met to advocate for cervical cancer screening guidelines on Capitol Hill.

I had absolutely no idea what I was getting myself into, but I never could have imagined the empowering and validating journey the decision to take part in that “Cervivor’s Lobbying Day on the Hill” would mark the beginning of. 

Tracie meeting with legislators on Capitol Hill in 2018.

Despite never having met any of the other women in person, I was instantly at ease with each of them. Experiencing the positivity of the  relationships that can develop when you have a common goal, passion, and past is something I will forever be grateful for. I’ve never forgotten the feelings and emotions of my first Cervivor experience and the deep connections that so quickly evolved!

My “why” was formed as I realized our stories were being heard.

My “why” was fueled as I realized that our stories mattered and held the potential to evoke change. 

Prior to this trip, my experience with Cervivor was online chats and questions with our late lead ambassador, Erica, who actually introduced me to Cervivor. I’d read tons of the posts on the Cervivor groups on Facebook but had engaged in only limited interaction. That has since changed! This group was – and still is –  better than Google when something felt off or when I just needed advice on navigating my cancer journey. 

Prior to this first advocacy experience, I’d known deep down that I needed to tell my story. I knew enduring, and surviving, two battles with cervical cancer by age 31 was bound to have a greater purpose. I had tossed around the idea of blogging a little here and there, and I had  told parts of my story once at a local breast cancer event. What I had done the most of though, was question if my story was something anyone outside of my immediate family and friends would ever need or want to hear. I no longer question that.

Three years ago, during this quick trip to Washington, DC,  I learned the importance of sharing my story. Of sharing OUR  stories. I learned how much more impactful it is to advocate with others. The diverse paths of our cancer journeys spoke volumes to the ears they fell on. I learned firsthand how we truly are stronger together.

My fellow Cervivors at Lobby Day 2018, and my “Why” today.

I am personally stronger, bolder and more confident as a result of my connection with Cervivor. Today, I continue my mission for the women in this photo. Too many lost their lives to cervical cancer. Holly. Teolita. Brittany. Today, they are a core part of my “why” – why I’ll keep story sharing and educating and advocating. They were a lifeline for me that day on the Hill and beyond. I continue for them. I continue for me. I continue for women everywhere who we can protect from cervical cancer.

My kids are also a big part of my “why.” As a mom of two boys, I want to shout from the rooftops that the HPV vaccine is safe and effective not only for girls, but also that we should consider it our parental duty to vaccinate our BOYS, too! This is part of my story now, and how I use my voice and my story to make change.

Remember, there will always be someone that needs to hear your story. Someone somewhere will always find hope in reading or hearing your story. Someone will always find themselves being educated through your story. If you haven’t done so, take a leap outside of your comfort zone and share your story today at https://cervivor.org/stories/.

Tracie lives in Alabama with her husband and two boys. She was originally diagnosed with stage 1b cervical adenocarcinoma in November 2013 just before her 28th birthday and had a recurrence in 2016 at the age of 31. Tracie has been an active advocate, using her voice and her story to educate her community about cervical cancer prevention. Read some of the news articles that have resulted from her outreach.

Read Tracie’s Cervivor Story

Black History Month and the Disparities Still To Overcome

As we discussed in an earlier post, advancements in the understanding of cervical cancer and the invention of the HPV vaccine are inextricably intertwined with Black History Month (February). Why? Because the “HeLa cells” used in groundbreaking scientific research were from the cells of Henrietta Lacks, a young Black woman who lost her life to cervical cancer in 1951 and whose cell lines have transformed modern medicine.

While HeLa cells were critical to the science that led to the HPV vaccines that have the power to prevent cervical cancer, today Black women in the U.S. bear a disproportionate burden of cervical cancer. Although  cervical cancer occurs most often in Hispanic women, Black women have lower 5-year survival rates and die more often than any other race.  In fact, they have nearly twice the cervical cancer mortality rate compared to white women. 

Why?

Interestingly, while most women with cervical cancer were probably exposed to cancer-causing HPV types years before, on average, Black women do not receive a diagnosis until 51 years of age. That compares to white women who have a median age of cervical cancer diagnosis at 48. Those three crucial years could make the difference between a treatable versus terminal cancer.

Why?

Researchers have reported that due to social and economic disparities, many Black women do not have access to regular screenings. Screening programs often fail to reach women living in an inner city or rural areas because of lack of transportation, education, health insurance, primary care providers who can perform cervical cancer screenings, or availability of nearby specialists for follow-on care.

How can we make a meaningful difference? 

The underlying causes of health disparities are complex and are multi-layers with lifestyle factors (obesity, cigarette smoking, etc.), socioeconomic factors (access to health insurance, access to healthcare providers), representation in research (clinical trials), and much much more. Yet there are still meaningful ways to make a 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.

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) has programs – and importantly, partnerships – in place across states, territories and tribal lands.

For example, in South Carolina, NBCCEDP has brought screening to underserved communities in collaboration with nonprofits and faith-based groups including The Best Chance Network and Catawba Indian Nation. In Nevada, programs with Women’s Health Connection increased screening numbers by 30%. Connect with your state’s screening programs. Share info about local screening programs and events. 

Encourage HPV vaccination

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. 

During this year’s Black History Month, let’s work together to change the history of cervical cancer.

The Power of Setting Boundaries

This past Fall I was a keynote speaker for the Cervical Cancer Summit and spoke about the development of my three word “Why” statement. Why I keep fighting each day, educating and advocating about cervical cancer so that no other woman has to go through what I am going through. Why I speak up, research, question and give it my all. For me, my why statement is “Know Your Existence.”

I want women – and mothers especially – to know that their health and their checkups are equally as important  as their families’. I want minority women, especially in the Asian culture where  below-the-belt subjects are rarely discussed, to know how important their annual women’s health checkups are. I want women to Know Their Existence matters.

For me, part of Know Your Existence also means know what you need, physically and spiritually.  During my talk, I spoke about boundaries and how important it is to set boundaries with friends and loved ones during your cancer journey. Wherever you are in your cancer journey – initial diagnosis, surgery, chemo, radiation, etc. –  boundaries are extremely important. I did not set up boundaries the first time I was diagnosed and, as a result, I often cared too much about how others around me were feeling and dealing with MY diagnosis.

With my recurrence, it was a whole new ball game. For my own health and my own sanity, I put boundaries in place. It was no longer about how others were dealing with what I was going through. It was no longer making sure everybody else was okay. It was no longer about getting together with friends because I would feel bad or felt obligated. It was now about me and what my soul needed.

Everyone has good intentions. They want to be supportive and helpful, but it’s up to you to let your support system know exactly what you need from them.

Becky with members of her “squad” of support.

I do want to stress the importance of a solid support system. But, it’s important to really be in control of who is in your squad. Overall, I have been extremely blessed to have an amazing support system. They listen to what my needs are. They respect me when it takes me days to respond to a text or call because I am not always in the mood to talk. At the end of the day, they know what boundaries I have set in place and they honor them.

Unfortunately, we all have some people in our lives that I like to call “energy vampires.” These are the folks that, though they may mean well, leave you emotionally drained after a conversation because they have literally sucked out the little energy that you do have. When dealing with the trauma and hell that cancer brings into your life, there is no better time to draw some strict boundaries around these folks and the access they have to you.

Unfortunately, I’ve come to learn that some people are just drawn to other people’s suffering and pain and only “show up” because at the end of the day, it really is about them and not you. These are people who might show up for a visit, but at the end of the day leave you feeling like the visit was only to make themselves feel better rather than to make you feel better.

I learned this first-hand when I had a few people who wanted to be there for me only on my chemo days. Almost like they wanted some sort of credit for showing up and sitting with me. Sorry folks, this isn’t school and you don’t get credit for just “showing up.” It is wonderful to have your solid support come visit and sit during those long chemo days, but make sure the people visiting are there for the right reason: YOU. If you want to take a nap while someone is visiting, take a nap. Don’t feel the need to entertain someone. Boundaries people, boundaries. There is no better advocate for yourself than yourself, remember that.

At the end of the day, I just want everyone, not just those who are going through trauma to truly understand how important boundaries are in our lives. I want people to know that it is okay to set boundaries for yourself and to not feel guilty about it. Know that you matter. Know that your voice matters. Know Your Existence.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending Meet Ups, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. Read her Cervivor story and learn how she brings her passion and Cervivor Spark to help stop cervical cancer.

What Do Black History Month and World Cancer Day (Feb. 4) Have In Common?

Advancements in the understanding and treatment of cervical cancer are inextricably intertwined with Black History Month. Why? Because the “HeLa cells” used in the scientific research that generated the HPV vaccines were from the cells of Henrietta Lacks, a Black woman who lost her life to cervical cancer in 1951, at age 31.

Physicians at Johns Hopkins University, where Lacks was treated, cultured cells from her tumors for medical research (notably, without her or her family’s knowledge or consent). Her cells survived, thrived, and multiplied outside her body, so much so that they have been in continual use in labs around the world. HeLa cells have helped change the course of modern medicine, contributing to medical breakthroughs including the development of the polio vaccine, and treatments for cancer, HIV/AIDS, leukemia, and Parkinson’s disease. HeLa cells were also of course instrumental to the development of the HPV vaccines.

Today in America, Blacks face the highest death rate and lowest survival rate of any racial or ethnic group for most cancers. This is certainly true for cervical cancer. Although in the U.S. cervical cancer occurs most often in Hispanic women, Black women tend to have lower 5-year survival rates and die from the disease more often than any other race.  In fact, they have twice the cervical cancer mortality rate compared to white women, according to the American Cancer Society. Henrietta Lacks, through her children and grandchildren, is continuing to have impact and address disparities. 

The Henrietta Lacks Enhancing Cancer Research Act

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Federal legislation focused on closing health gaps and improving access to clinical trials for people of color was signed into law in January 2021: the “Henrietta Lacks Enhancing Cancer Research Act” now mandates the government to reduce barriers to enrollment for underrepresented populations in federally-funded cancer clinical trials.

“While cancer impacts everyone, it does not affect everyone equally,” says Lisa Lacasse, president of the American Cancer Society Cancer Action Network. “The Henrietta Lacks Enhancing Cancer Research Act is critical to changing this reality, improving cancer outcomes and reducing health disparities in this country.” The newly enacted law builds upon Henrietta Lacks’ legacy by ensuring equitable access to advancements in cancer treatment for all people.

Learn More About Henrietta Lacks on World Cancer Day (Feb. 4)

In recognition of Black History Month (February) and World Cancer Day (Feb. 4) is a special virtual event: Henrietta Lacks’ great-granddaughter Veronica Robinson will host a conversation with the American Cancer Society Cancer Action Network’s VP of Federal Advocacy & Strategic Alliances, Keysha Brooks-Coley to discuss the new legislation, its importance and its intended impact on addressing some of the cancer disparities in our country. The event will be held Thursday, Feb. 4 at 1:00 PM ET on Zoom and Facebook Live.  Learn more and register.

What You Need To Know About Cervical Cancer Prevention

January is Cervical Cancer Awareness Month. We at Cervivor, a global group of cervical cancer survivors committed to ending cervical cancer, want  you to be aware of this: cervical cancer is completely preventable through vaccination and screening. This January, get familiar with these 5 things to know about cervical cancer prevention.

Know What Causes Cervical Cancer: HPV

  1. Nearly all cervical cancer is caused by the human papillomavirus (HPV), the most common sexually transmitted infection. Nearly 80 million Americans have HPV at any given time, and about 14 million become newly infected every year. In fact, most sexually active people contract HPV at some point in their lives. The virus spreads easily through skin-to-skin sexual contact; sex doesn’t have to occur for the infection to spread. Most types of HPV don’t post a health risk and don’t cause symptoms, so many people don’t ever know they have it. The good news is: more than 90 percent of all new HPV infections go away on their own, fought off by the body’s immune system. Yet for some women, HPV stay in the body, is not cleared by the immune system, and can lead to cell changes that result in cervical cancer.   

Get the HPV Vaccine for Yourself and/or Your Kids

  1. HPV vaccines have been available in the United States since 2006. These vaccines protect against infection with the HPV types most commonly linked to cancer, as well as some types that can cause genital warts. The vaccine prevents HPV infection – and, as a result, prevents cervical cancer as well as prevents against other cancers related to HPV such as penile cancer, anal cancer, vulvar and vaginal cancer. 
  1. The Centers for Disease Control recommends the HPV vaccine for girls and boys ages 11 to 12. At this age, the vaccine is administered in two doses spaced six to 12 months apart. Since this isn’t a school-mandated vaccine, parents need to be proactive and ask their pediatricians and family practice physicians for it.
  1. Older teens and adults also can receive the HPV vaccine. Immune response to the HPV vaccine in adults and older teens is different than in children, so recommendations are for a series of three doses, rather than two. 

Keep Up with Pap & HPV Testing to Catch Any Early Pre-Cancers

  1. Cervical cancer progresses slowly, so don’t skip your pap test! Keeping up with your “well woman” health visits is a proven way to prevent cervical cancer. Certain “high risk” types of HPV cause the cells to progress from a pre-cancer stage to invasive cancer, but that progression can be slow so there is ample opportunity to capture cancer through screening before it develops. Be vigilant about seeing your gynecologist or family physician for Pap testing (which looks for abnormalities caused by HPV) and HPV testing (which looks for the presence of the high-risk strains on HPV). 

The American Cancer Society reports that about 13,800 new cases of invasive cervical cancer are diagnosed each year in the U.S., and about 4,290 women will die from this disease. Worldwide those numbers are as high as 570,000 newly diagnosed and more than 300,000 die annually.

We at Cervivor, survivors of cervical cancer who are living with its aftermath, work to ensure that others do not suffer or die from this very preventable cancer. Screen. Vaccinate. Prevent cervical cancer. Spread the word.

What Our Medical Teams Told Us

We asked our I’m A Cervivor! community, “What was the best advice your doctor or medical team gave you?” Our community didn’t disappoint and they provided some fantastic responses. We’re thrilled to be sharing them here for Medical Team Monday.

I think the best advice I got was just to be prepared for the fact that once I went back to work, a lot of people were going to assume that I was fine and could work at full speed. That prepared me to be ready to set some boundaries. It turned out to be really true. Honestly, I even felt the betrayal by certain women that I thought for sure would understand that this had been a big deal physically. ~ Laurie

Best advice from my OB was to take the misoprostol orally not vaginally. Tastes AWFUL but she was right, it works better. Also, she told me she was happy I lost the crappy husband. “You deserve someone who will be there for you not when you need him to but for all the times when you don’t need him to.” ~ Sarah

“Learn as much as you can about your illness” – he pretty much empowered me to take charge. ~ Maria

“Rachel, drink the damn scotch.” ~ Rachel

We’ve all been through so much and we desperately want our doctors and medical teams to hear us. That includes listening to our concerns, helping us navigate through all the unknowns (we are not the experts), and ultimately be that credible resource. Communication is so important to everyone involved and it starts by meeting us where we’re at, building and leading with empathy and compassion, which in turn is improving our quality of life overall.

“Breathe, smile, do not give up on yourself.” “You are stronger than you think!” “Don’t be afraid to ask us anything.” haha I’ve made them wish they never said that last part. We’re like family now lol. ~ Re’gina

You got this. Just breathe and let’s move forward. I’ll give you meds when you feel it’s too much. (I love him for that!) ~ Karla

Our medical teams are our heroes, and, in a way, we can be theirs as well. By telling our stories, both medical and survivor, we can shape the narrative of how cancer is treated. It’s not just cancer, there is a person attached to that diagnosis. Together we can create a powerful partnership and make a difference.

A Decade of Advocacy

It is surreal for me to think that I have been an advocate and sharing my story of cervical cancer for ten years.  I say this because after treatment, I just wanted to stay quiet.  Not talk about the whole ordeal and just move forward.

I am sure many survivors feel this way after treatment, but I have also met many that are very vocal about every single step of their journey.  I was not one of them.  I do not have any documentation about my journey.  The only thing I have are 35 hospital bracelets for each time I had a radiation treatment.  

It wasn’t until four months after treatment that my brother insisted on doing a cervical cancer walk. A coincidence? Perhaps. I will never know.  At first, I did not want to do it, but he insisted so much that I gave in. 

Walk to Beat the Clock – NYC

On September 19, 2009, at the Walk to Beat the Clock, I met Tamika Felder, a cervical cancer survivor and the founder of Tamika and Friends, which later rebranded to Cervivor.  That day I met other survivors as well.  They were sharing their cervical cancer stories.  These stories were similar to mine and told with such heart, passion and confidence.

First time meeting Tamika

I was in awe.  I was inspired and motivated but most importantly I did not feel alone anymore.  At that moment, I made a decision that I wanted to join the cause and the movement. I wanted to share my own story and let other women know that my journey did not have to be theirs and that they were not alone. 

My mission became even clearer when Tamika invited me to a Latino Summit in Washington D.C. It was there that I learned the statistics between cervical cancer and Latinas

To be able to share my own story I needed to be authentic, open and be able to deliver it with an open heart.  Tamika said to me at the very beginning “always tell your story from your heart, because when it comes from the heart people listen.” I have applied this statement to the hundreds of times I have told my story and I still do.  

First radio interview

I still remember the first time I told my story. It was March 28, 2010 and it was a radio interview in Spanish for 95.9 FM El Poder Latino (The Latino Power).  I was so nervous, my heart was pounding, but I remembered what Tamika had told me to do and I spoke from the heart.

On January 25, 2014, I attended the first Cervivor School, which took place in New York City.  Cervivor School is a life-changing event. It is empowering, informational, educational and inspirational.  We also get to share our views, our stories, our concerns, our goals, our obstacles and our strengths.  It is so important that survivors who become advocates are educated and informed with the latest facts to be able to bring the proper message forward. 

It has been a journey of highs and lows.  The reality of things is that not everyone is going to be interested in listening to your story or anything you have to say and this had to be OK with me. I did not let this discourage me.  As advocates, we set to save the world. Unfortunately, I came to the realization that I cannot save the world, I cannot even save New York City, where I reside, but if my message gets to one person in the crowd, I have completed my mission. 

Through the years, there have been many ways I have advocated: free cervical cancer screening events, health fairs and interviews with different media outlets. Not every presentation or interview has been perfect, but I can honestly say that I never did it for the accolades.  I do it to educate women that need to know that this cancer is preventable and treatable if found early.  We lose over 4000 women every year in the United States alone. These women were someone’s wife, aunt, daughter, mother, grandmother and their lives matter.

I am very proud of the work I do as an advocate and I am humbled to say that my advocacy work has been recognized.  

New York City Proclamation

All the work has been important to me, but I hold two events dear to my heart. The first is the proclamation for my advocacy, given to me by the New York City Council on January 10, 2015. This was one of the proudest moments of my advocacy world. 

Lasker Awards with Dr. Lowy

The other was being invited to the Lasker Awards  in 2017 where I met Dr. Douglas R. Lowy and Dr. John T. Schiller, the two scientists that were the recipients of that year’s  award for their technological advances enabling the development of the human papillomavirus (HPV) vaccine which prevents cervical cancer and other tumors.  So proud that my story was featured in their submitted video

My advocacy journey has brought me full circle.  Today I lead a survivor fitness group as the Cervivor Wellness Instructor.  Survivor Slimdown is a Facebook group open to ALL CANCER SURVIVORS.  It is a space for inspiration, motivation and accountability as we learn to navigate our way to health after a cancer diagnosis.

I must say that the best part of my advocacy has been meeting my wonderful and inspirational Cervivor sisters.  Every single one of them has a story that matters.  Stories that show resilience, courage and strength.  Unfortunately, many of them are no longer here, but we keep them in our hearts.  We honor them by continuing to share their stories and legacies because they did make a difference. 

We all bond with the same mission to end cervical cancer and to make our generation the last one to fight this disease.

Advocacy in action!

My heartfelt thanks to Tamika Felder and the Cervivor organization for giving me a voice and a platform to share my story. This organization has supported me on my way back.  They have also supported so many other women fighting and surviving this disease. I will never feel alone again.

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown Facebook group. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

Surviving Cervical Cancer: Tips from Our Community

We develop tools to navigate through life’s rough waters but when you’re on the receiving end of a cervical cancer diagnosis, it’s like your toolbox is suddenly empty.

Something that almost everyone in our Cervivor community has said is that no one ever wants to be in a ‘cancer club’ but when you do find your community, things feel less scary. Now you can share coping and wellness tools, help others and find support from those who ‘get it’.

To provide that support, our community is sharing their tips for coping through a cancer diagnosis.

Keep a box of cards/letters/hospital bracelets/etc. This can be a vital way of processing through your emotions every now and again. You can reflect on the support you received and everything you survived. ~ Morgan N.

During treatment, sleep when you’re tired and eat when you’re hungry. Keeping your body well rested and nourished is a priority. ~Emily H.

I had to learn to say, “NO!” and to take time for myself to rest. Morning and evening meditation really helped me and art is my escape from it all. ~ Tasha B.

Yoga and meditation and eating clean! Meditation helped me focus on one thing. Eating clean gives me advantage on fighting back with nutrient vitamins to restore and help my body and digestive system. ~ Re’gina P.

I schedule time to rest. Be it meditation, reading, sitting in the sun, even aimlessly scrolling – just to be still for 30 mins or 1 hour during the day. I say I’m busy. Busy resting. ~ Samantha R.

Not only are our bodies going through so much with side effects, treatments and surgeries but cancer takes a toll on our spirit and mental health. Taking time to rest and reset, however that looks to you, is so important. Maybe this means reaching out and asking for help. Maybe it’s calling that friend who always knows how to make you laugh, or maybe it’s lying in bed and just crying. Creating space for ourselves is healing. Self-care comes in many forms and none of it is selfish.

Getting outside, even if it was just to walk to the mail box or sitting in my backyard. A little vitamin D always makes me feel better. ~ Carol L.

For me, it’s always been; yoga, meditation, walking/hiking, a religious sleep schedule, cooking/baking, time with friends, music, and quiet time reading. ~ Tracy C.

Listen to your body and resting whenever needed. This was very hard for me because I was so used to go, go, go but it’s so important to let your body rest and repair. ~ Gracie C.

There was overwhelming gratitude from survivors for their medical providers. From amazing Gynocological Oncology teams, Infusion and Radiation teams, to PA’s, RN’s and everyone who works hard to keep us alive to live. When you have a good oncology team, it’s a game changer.

Eating healthy food and sessions with my Oncology Physical Therapist to help with hip pain, regular varied movement, and journaling. ~ Christina B.

Finding my ‘safe spot’ to mentally escape for a bit. Learning to let others take care of me. Coloring and enjoying nature. I’m very tactical and the ears on my dog help soothe me.  ~ Karen N.

I learned to create boundaries from negative things/people. Using no, for my own wellbeing is essential. ~ Lorie W.

Another common thread we heard from you was the support you received from family and friends. Being surrounded and supported by people who put care into action means so much. Whether this comes in the form of prayer circles, meals being delivered or being that person holding our hand, all are great acts of loving kindness. And who doesn’t need more of that?

As cervical cancer patients, survivors and thrivers we have a special community. One that feels tight-knit because we know that through our voices we have the power to ignite a conversation and to help others. We know that our stories can have an impact on someone else’s life. That, through those stories, ending cervical cancer can be reached.

What are some tips you used to get through your diagnosis or life-changing event? How does wellness play a part in survival today?

Breathe in Self-love, Exhale Gratitude

These words will be in the forefront of my mind as I continue through Cervical Cancer Awareness Month.  We welcomed Deb Jennings of Sounds for the Soul to lead us in our first Self-Care Sunday session. It was a self-guided meditation with singing bowls, flutes, and chimes. I’ve had some experience with meditation and used to practice it quite frequently. However, like most things in 2020, I fell out of habit.

Starting the session, I was eager, slightly nervous, yet super excited. I haven’t hosted many virtual events in my lifetime. I wasn’t sure how I was going to be able to relax but I would quickly be proven wrong. In fact, I was not expecting my body to react the way it did in today’s session. 

Deb started in with her singing bowl and what felt like a gentle nudge into a guided meditation. A few minutes passed by as we were breathing in a self-love affirmation and breathing out another affirmation of gratitude.There were several pitches and frequencies starting to awaken my heart and my mind. My body was resting. I was overcome by a chill as we welcomed in the helping energy of our higher selves. It was then I heard the sound of a flute and a beautiful song voice. The mantra stated, “I release control and surrender to the flow of love that will heal me.” It was exactly what I needed in that moment. I felt the tears welling up, pooling, then releasing a stream ever so gently down my face. Relief, probably the first I have felt that in many months and I’m not the only one.

Re’gina, a cervical cancer survivor located in Wisconsin shares, “This session also allowed me to remember a place I loved as a child, fond memory of San Bernardino mountains, Lyttle creek, pine trees, river rocks and mountain water… ahh. I’ll be keeping this memory alive for future meditation and happy placeness.”

Lorie, another cervical cancer survivor located in Michigan shares, “Her soothing voice, emotive language, and sound bowls brought me to a place of peace, so much so that I liked her page immediately when the session ended. The moderator and guide made my morning more peaceful.”

As you can see, spiritual things are felt and experienced when we give ourselves permission to receive those messages. Some trigger a release of emotions we didn’t know were even there. We cannot ignore the incredible messages embedded into Deb’s guided meditation, the ones that resonated with our community were anywhere from self-love and gratitude to forgiveness and healing and last but not least, leaning into our community for support.

Sunday evening proved to be yet another important lesson in self-care, love, and gratitude for many who attended. Cervical cancer survivor and yoga/meditation teacher, Tara Casagrande, led a candlelight foot scrub and meditation.  It was the perfect way to round out a self-care Sunday.

Tara’s words were effective.  She explained the root chakra and its connection to the area where the cervix is located.  Tara emphasized how this small act of self-compassion could have a lasting impact.  She taught us how to appreciate the relationship between one’s self and their feet.  It was imperative to understand just how much work they’ve been through in the past year.  This was a moment to give appreciation and gratitude for them. 

Tamika, Cervivor founder and 19-year survivor, described the sensory experience from the texture of the scrub, to the warmth and the wetness of the water, and then catching the sweet, familiar scent of vanilla. She is adding the mantra of the evening into her daily affirmations: “I feel safe.  I’m at home in my body.”

Tasha, a cervical cancer survivor in Florida, stated how before the COVID pandemic hit, it was a regular thing for her and her daughter to go have spa days.  She has made a goal to practice the self-care routine once a week with her daughter using the recipe provided.  She also enjoyed playing some smooth jazz while unwinding during the event.  In her own words, “I love it!”

Emily, a cervical cancer survivor in Iowa says, “I didn’t have the ingredients for this scrub tonight, but I went through the motions anyways and it felt like a foot massage. Connecting with my feet and my toes, it felt good. A few weeks from now when I’m with my parents, I can see my mom and I sitting on the edge of the bathtub and doing this together as a little foot massage/girl time.”

Self-care is not selfish. In fact, without experiences like this to make us more self-aware, we often jeopardize our health and well-being while running ourselves ragged. Most of us that know how hard we can be on our own self.  We can be our own worst critics, but we need to allow some grace.  We see the incredible emotional support we receive every day within our community, and we want to encourage all of us to take it a step further. Let’s hold each other accountable in developing good habits including self-care.  

Stay tuned as we have more opportunities throughout the month of January with our Wellness Wednesdays and our virtual Pap Rally & Run. Join us and treat yourself to some self-care!

Morgan Newman is a metastatic cervical cancer survivor, a Cervivor Ambassador, the 2018 Cervivor Champion recipient, 2019 Iowa American Cancer Society Action Network advocate and the 2020 Advocate of the Year by Above & Beyond Cancer.

“On Wednesdays we wear Pink”… wait, what?

That is something my son Matthew always said to me, and I always laughed.  I had no idea that line came from the movie Mean Girls, nor how much I would remember this comment and how it evolved and shaped my Teal & White Tuesdays.  

I knew pink was the color for breast cancer as I had already been down that path.  I had no idea what the ribbon color was for cervical cancer. When I received my diagnosis in 2015, I had to research the ribbon to find out what my color of ribbon would be. Deep down somewhere in my subconscious, I knew I would be wearing that color for the rest of my life.  

After my lengthy treatment battles, I found Cervivor. This became my “go to” group for information, help and support.  I loved it when they said to wear teal & white on Tuesdays.  An idea began to form.  

I attended Cervivor School in 2019 with much help and support from my friends and family.  I honestly don’t remember Tamika’s exact question that day at Cervivor School, but I immediately remember my response, “On Tuesdays, we wear Teal and White.” Thanks Matthew, for the quote from so many years ago!! The idea continues…

I have bought my son several ties and dress shirts in the teal and white theme that he proudly wears to work. I make an effort to post something on my social media accounts about #TealAndWhiteTuesday every week to remind people about cervical cancer, to get your cancer screenings, to get your vaccinations, and to promote awareness. The idea is growing.

In January of 2020 during CCAM, I was invited to Matthew’s place of employment, Hy-Vee. They did a promotion during that year to promote cervical cancer awareness. I had so many more plans for public awareness campaigns, but 2020 had other plans for meeting people.

I was forced to refocus my efforts, and the idea began to fully bloom.  Pandemic boredom = creative, crafting mind flow.  I started off with buying printable iron on sheets and made one shirt.  I wanted more.  I created a better graphic design and had made several more shirts.  I handed out twelve shirts to people, and five of them went to high school age girls. We discussed cervical cancer and the need to take care of yourself, even at a young age.

I made and sold teal and white kitchen pot scrubbers, with proceeds going to Cervivor. I attend the Cervivor virtual holiday party and am now on the CCAM Planning Committee. I tell everyone I meet that health is a PRIORITY in life and do not ignore it! 

I post about cervical cancer and Cervivor so often now on social media to spread the word. I talk about it with my friends and family. I am not ashamed or too shy to share my story with others, no matter who they are.  I want people to know how this affected me, and how I am a stronger person now for the ordeal I survived.

The impact that Cervivor School had on me to advocate and talk about this has amazed even myself.  I was not even sure about going, and here I am a year later involved as I can be and loving every minute of it.    

I love #TealAndWhiteTuesday and dress in it every week, even if I am not leaving the house to go anywhere. I am forever grateful to my family and friends in supporting me to get the word out, and I love how involved they have become to spread the word as well.

Have you ever noticed how many people actually read the t-shirts people wear? Have you stopped yourself to read someone’s shirt as they walk by you? It offers an ice breaker without having to say a word.  

“On Tuesdays we wear Teal and White.” Spread the word.

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. She is a six-year breast cancer survivor and a four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor

Why January is Our Month

Within the Cervivor community we talk a lot about feeling like our cervical cancer doesn’t have the visibility that breast cancer has. But it takes a village, a global voice, to make even the smallest impact. And it does not happen overnight.

As Lead Cervivor Ambassador, I want to elevate the voices within our below-the-belt club. I want you to know how important your personal story fits into Cervivor’s mission to end cervical cancer. I have the pleasure to chair this years Cervical Cancer Awareness Month (CCAM) Planning Committee and I cannot be more proud of the work this team has done for this community. January gives us an entire month to educate about the importance of cervical cancer prevention and splash our social media channels teal & white!

Collectively, we are the catalyst needed for change and change takes every voice and everyone’s action. This month we are creating a platform for you to build upon; to get people talking about cervical cancer awareness and prevention. Our CCAM committee has gone above and beyond to make January 2021 the best ever!

There are so many amazing events I am excited for this month. We truly have something for everyone. Since 2020 gave me more time at home, I started incorporating more fitness into my daily life so the fact that we are hosting a virtual Pap Rally & Run has got me pumped up!

I’m always up for talking about the more intimate side of cervical cancer and how that effects us. Sexy Saturday discussions will be filled with all the stuff we love to talk about with those who completely ‘get it’.

Be sure to check out our January CCAM calendar and participate with us all month long. We need you and your Cervivor Spark! Engage in conversations on our Facebook, Instagram, Twitter and Pinterest and share Cervivor’s content throughout the month.

At Cervivor, our CCAM mission is clear, make January Cervivor’s month to shine and showcase how we will #EndCervicalCancer. I hope you join us and help us spread the word. Ending cervical cancer is within our reach — especially when we work together. 

Carol Lacey, Lead Cervivor Ambassador and 2020 Cervivor Champion. Read or watch Carol’s Cervivor Story.

Creating New Habits Instead of Resolutions

Did you make a New Year’s Resolution? I used to, but then I just got tired of just not sticking to it and giving it up all together after the first month.

We have to acknowledge that there are people out there that keep their resolutions throughout the year and are successful. However, statistics show that even though millions of Americans make resolutions, less than 8% actually stick to them.

Therefore, we are going to stick to small changes. Changes that are actually achievable while we are working on our consistency muscle. The more you are consistent and succeed, the greater confidence in your ability to do it again. It actually helps you grow the belief that you can do it.  

I am inviting you to join our first challenge of the 2021 on Survivor Slimdown. Survivor Slimdown is a Facebook group open to ALL CANCER SURVIVORS. It is a space for inspiration, motivation and accountability as we learn to navigate our way to health.  Also, join me for a virtual workout on Wednesday, January 6th. Register for free here: https://bit.ly/37GpDjr 

The January challenge consists of creating new habits. Over time, patterns form both in behavior and in the brain. This can make it difficult to break a habit or even to form new ones. Therefore, we will start easy and we will succeed. 

As a group, we will work on two habits for the month, but if you want to add a third one on your own please do – just remember to make it small, sustainable, specific and achievable. We will stick to these actions for the 31 days in January.  We will use the habit tracker and cross each day for accountability. Our mantra for the month is “NEVER MISS TWICE.”

Habit 1

Drink an 8oz. glass of water after waking up and before having any food and/or coffee.

Drinking water in the morning will help you kick-start your metabolism.  Staying hydrated helps your body start to burn calories faster, which is vital when you are trying to shed body fat. Even if you are not looking to lose any body fat, hydrating the body brings many health benefits. 

Habit 2

Move your body for 10 minutes a day.  If you get to do more than 10 minutes great, but the minimum is 10 minutes. (Walk, dance, ride your bike, stretch, etc.)  Stay true to yourself.  

Moving is the best medicine for the body and the mind. It strengthens your muscles, which improves stability, balance and coordination. Stretching maintains muscle health as well. Movements help build more durable and denser bones.

Habit 3

The third habit is your choice. It cannot be something that you already do in your daily routine. Some examples of the third habit can be:

  • Wake up an hour earlier than usual
  • Meditate for 5-10 minutes in the morning
  • Add a veggie to each meal you eat
  • Make your bed after you get up – if you are not doing this already
  • Go to bed at a specific time at night
  • Chew your food 22 times before swallowing
  • Journal on a daily basis for 31 days
  • Read 10 pages every day of the book you have been wanting to read
  • Write three things you are grateful for every day
  • Say a daily affirmation
  • Learn a new word every day

The above are examples of small habits but you can choose any habit that aligns to your master goal.

Remember, if you want to drink more than 8oz of water in the morning before food or coffee you can. If you want to move more than 10 minutes a day you can. The concept is for your habit to be achievable and not get too overwhelmed. When we feel overwhelmed, we tend to quit. Quitting is not an option.  

Let us start this year with a successful month by sticking to these small and achievable habits. We got this!

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor who manages our Survivor Slimdown Facebook group. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

My Security Blanket

Some cancer patients who undergo chemotherapy treatments opt to have a medi-port implanted. Sounds bionic right? Super powers you will not have but this is a pain-free way to receive systemic treatments and blood draws. 

I was holding on to Porsche, my PowerPort™ partly as a security blanket of sorts. I have recurrent, metastatic cervical cancer and for five years she was working pretty much non-stop. 

Port flush day

When you’re port isn’t in use, you have it flushed with saline every three months or so. Kind of inconvenient but I kept it up and each time Porsche grew increasingly defiant. I had to practically stand on my head to get her to give a blood return. Clearly, she was tired and I didn’t blame her.

I’ve been NEND (no evidence of new disease) for four years now so I thought it was time to let her go. I just didn’t think I’d be doing it during a pandemic when maybe being in a hospital wasn’t the first place you’d want to be.

Once I made peace with my COVID fear, what really hit me as I walked into the hospital was that I was doing this alone. No partner, no kids, no parents, no friends. I never had to go through any previous surgeries without this support. I always had a hand to hold and a familiar face to see. 

What made the experience better was the amazing pre-op team. It felt good to talk with the nurses about their work during COVID, and I was just so grateful to them. Their care has always been exceptional but it felt broader this time.

Surgery was a breeze, and my doctor even showed me Porsche so I could thank her one last time for all her hard work. One of my breast cancer besties said that some people are decorating their ports as keepsakes! 

I love that we all decide how to move through our traumas in our own way. Bedazzling ports, getting special tattoos, sharing our experiences on social media, or simply holding space for our hurt. Whatever speaks to you is the best way to heal.

Carol is our Lead Cervivor Ambassador who manages our Cervivor MeetUp program and heads our CCAM 2021 Committee. She was named our 2020 Cervivor Champion award recipient. Carol lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace.

The Heart of a Caregiver

Dr. Nina Rickenbacker Edwards lost her daughter Teolita to cervical cancer in 2019. Teolita had been an active member of Cervivor and a proactive advocate about cervical cancer. “Whenever or wherever Teolita was given an opportunity to speak, she would use that time to raise awareness about cervical cancer,” Nina reports. In honor of her daughter’s mission to outreach and educate, Nina shares some lessons and perspectives on caregiving for Caregiver Awareness Month.

My daughter Teolita passed in August 2019 – just a few weeks shy of her 39th birthday. During Teolita’s cancer journey, I reflected on the many roles that Teolita said I had played in her life: teacher, preacher, doctor, chastiser but most all, mother and best friend. Later during Teolita’s journey, I had to officially add the role of caregiver and provide support and care for my independent, brave and strong adult daughter when her physical health was waning.

I learned that there are some key characteristics one must have  – or develop – to be a loving caregiver: a heart that is full of compassion, joy, peace, patience, kindness, goodness, and gentleness.

  • Compassion comes from within. You understand what someone else is going through. You strive to do all you can to connect with the person you are giving care. 
  • Joy comes from accepting the challenge of taking care of someone and knowing that you are providing them with all the care and support you can provide. You feel useful, needed, and even gain a sense of purpose.  
  • Peace can be found in caregiving, regardless of the circumstances you are confronted. When you know that you have done all that you can, even if negative situations arise you can find peace in knowing that you gave it your all. 
  • Patience is a requirement for successful caregiving.  Patients needs can change daily, so you must be able to adjust to change on short notices. 
  • Kindness, goodness, and gentleness are essential to meeting and managing the needs of those in are care.

It was painful as a mother to see my daughter suffer. It was hard to watch my daughter fight with all she had. Teolita had such drive, determination, resilience and passion. But even in my own pain, I learned that as a caregiver, when we care for others from the heart, we can adapt to the circumstances and conditions of the loved one under our care.  In doing this, I received a profound sense of purpose and satisfaction knowing that I had a direct impact on the quality of my daughter’s life.

The advice Teolita would share with so many women was “you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you would ever imagine. Never give up, never give in. You had cancer; cancer didn’t have you.”

I think this advice applies to caregivers too. You are braver than you believe and stronger than you ever envisioned you could be. Be good to yourself so that you can give care with a full heart. As caregivers, we give so much of ourselves. Take a break and recharge.  You cannot possibly take care of another person if you are not physically and mentally healthy yourself.

To honor her daughter and continue Teolita’s mission of education and cervical cancer prevention, Nina and her community host an annual Teolita S. Rickenbacker Cervical Cancer Awareness Fundraiser Luncheon. See news coverage and TV clips of the January 2020 event.

Tell Me I Was A Good Mother, Tell Me I Did Everything I Could For Her

Colleen lost her daughter Caitlin to cervical cancer in May 2020. Caitlin was 32. Colleen was there on the day Caitlin received her Stage 4 diagnosis, and on the day she died just two years later. For Caregiver Awareness Month (November), Colleen shared some experiences and reflections with Cervivor:

I was with Caitlin April 13, 2018 – the day her doctors told her she had advanced cervical cancer.

I was familiar with the term “Stage 4.” I’m a surgical scrub nurse in the labor and delivery unit of our local hospital, so I know medical terminology. Maybe it was because of this that I could never fully wrap my  head around how she could possibly ever fully “beat” stage 4 cancer. So I prayed for time. I only got two years. She died on May 17, 2020.

I had hoped Caitlin would have more time to do some stuff before she died – to travel and experience the world. She kept on with different treatments. Chemo. Radiation. A clinical trial with an immunotherapy. They would work, a little bit. The tumors might shrink, but then come back. Or the treatment would work on the tumors in her cervix, but not on the cancer that had spread to the other parts of her body.  Still, she kept her spirits up. She kept fighting. She found a community of support in Cervivor. She did all that she could to share her story. She wanted to make sure that this didn’t need to happen to anyone else. She had so looked forward to attending the September 2019 Cervivor School in Chicago to hone her story sharing and outreach skills, but was ultimately too sick to attend.

As her mother, I just tried to accommodate her in any way I could. Whatever she wanted to do, I helped her do it. She surrounded herself with family and friends. She cherished her time with her nieces and her friends’ young children and took so much joy in them. Her best friends came from near and far and took turns living with her. Her brother came home from the military and stayed with her. She surrounded herself with love. Her friends made sure she was not alone. They did fundraisers to help with her medical costs. They organized meal drops. They strived to have “regular” Friday nights with pizza and beer, hanging out in her living room so that she didn’t have to give up her social life even when cancer was taking its toll. That made such an impression on me. I was proud that my daughter – always a fun and popular girl who loved going to concerts and music festivals – had such strong friendships and supportive friends.

I took the role of taking care of the caretakers. I cooked for everyone. I straightened up. That is the story of my life. I’m a mother and a nurse. But I wish I had stopped running around and just sat down to “be” with Caitlin. I wish I had just slowed down and spent time with her rather than always being so focused on “taking care” of her.

Yet at the same time, I’m always wondering, did I do enough for her?

Please tell me I did everything I could for her.

Please tell me I was a good mother.

I took family medical leave from work when Caitlin finally entered the care of hospice. I didn’t realize that two weeks after she started hospice, she would be gone.

Caitlin left me a gift that I am forever grateful for. Mother’s Day was a few days before she passed away. She gave me a beautiful Mother’s Day card that told me exactly what I needed to hear – that she loved me and loved her family. That card assured me that she knew she was loved and well cared for. I pray on those sentiments. I carry them with me.

I think what Caitlin would want to tell all women undergoing cervical cancer treatment, all women in general and, really, all people is this:

  • Listen to your body. Advocate for yourself.
  • None of the bullsh*t matters.
  • Cherish your time with your friends and your family.
  • Let go of FOMO (fear of missing out). If you are with your family and friends, there is nothing more important that you are missing.

I keep Caitlin alive in my mind every day. I talk to Caitlin’s friends about what is going on in their lives, and I find comfort in that. We are all friends on Facebook, and when a Facebook “memory” with Caitlin pops up for them, they share that with me.  They share photos of Caitlin at concerts, festivals, weddings and celebrations.  They share those photo memories of my beautiful daughter out enjoying the world with them. Her life was short. But she did amazing things and surrounded herself with amazing people. 

Have you kept up with our blogs? (If not, here are some highlights!)

Our Cervivor blog has been full of insights, energy, empathy and advice. If your brain is fried from too many Zoom meetings and screen time, we’ll whet your appetite and fill you in on what you may have missed:

 “Treatment was the longest, weirdest dream I’ve ever had,” shared Tash, in her September blog post. When her family accompanied her to the hospital to celebrate her final round of radiation, she thought she was “finally done” and ready to move on forever. “How naive I was to think that! I’ve learned over the past months that even though I’m done with treatment, treatment is not done with me. I’ve dealt with a plethora of side effects: I had what felt like a never-ending UTI. My bowels are a mess. My joints ache.” Read how Tash has come to terms with the long-lasting effects of treatment and discovered a newfound appreciation for her body – aches, pains and all. 

 “On a regular basis it takes three weeks for me to get my ostomy supplies to my home in Honduras. When COVID-19 made its way to us, Honduras was not ready for anything that came after March. Customs took months in letting them through,” reported Karla, a cervical and thyroid cancer survivor and an ostomate who shares her story openly and educates regularly in her country.  Read her blog about the headache of tracking down ostomy supplies during the COVID quarantine. (Also posted in Spanish)

 Why is it especially important now to keep up the conversation about HPV vaccination? Because so many routine healthcare visits have been cancelled or postponed, bringing a new level of complications to keeping up with recommended vaccines for individuals, families and clinicians alike. A recent New York Times article reported a  73 percent drop in HPV vaccinations, according to a pre- and post-COVID-19 comparison of electronic health records. Read what we can do to remind parents to not forget about getting their teens/tweens the HPV vaccine and all of the protections it offers.

Dr. Noel Brewer, Chair of the National HPV Vaccination Roundtable, shares why he starts many of his sessions and lectures with Cervivor Story videos. “You are a moral voice on cervical cancer and all of the ways it affects lives. I don’t know anyone who can speak as powerfully.” Read more from Dr. Brewer as he reflects on how personal stories help people grasp the importance of preventing cancer more than scientific data that “doesn’t always connect with people’s feelings and imagination.” 

Amid the craziness of the pandemic, the American Cancer Society updated its cervical cancer screening guidelines…and there are significant updates that we as survivors, advocates and educators should be aware of. Read Cervivor’s take on the ACS’ changing screening recommendation and our call to action

Losing Your Uterus, Losing Your Mind: Scientific Validation for Memory Loss After Cancer

When Samantha R. stumbled across a study suggesting that hysterectomies may cause memory problems, she clicked, read, and shared on our I’m A Cervivor Facebook group, kickstarting a dynamic discussion. Samantha shares her experience, her relief in finding the article, and the community of support that her post generated:

“Chemo brain gets a lot of discussion and attention, but not the topic of woman who had a hysterectomy or who have early onset menopause and who have similar fogginess. I actually did not have a hysterectomy but rather chemo-rad-brachy (stage 2b), which was oh so fun.  As radiation and chemo essentially killed my uterus and ovaries, this study about hysterectomies and memory loss caught my eye and resonated.

A wildlife ecologist, Samantha was diagnosed with cervical cancer at age 36 while in the midst of her postdoctoral research. The stress of the diagnosis and treatment on top of research and academics were brutal.

“After cancer, I couldn’t handle stress like I used to. I used to be able to do the cramming and the crunch time. But after treatment, I had really bad ‘chemo brain’ for at least a year until it finally started getting better. I still don’t feel as sharp as I was before, even though it’s been eight years since my diagnosis. As an academic with a master’s degree and a PhD, this had been really hard for me because my work, at the end of the day, depended on my brain. And of course brain fog doesn’t just impact work, but so many parts of life. My recall is slower. My short-term memory is slower. Things take me longer. It’s been hard for me to accept that my brain now functions differently. I used to be quick and make witty remarks. Now three days later, I come up with a response!”

Samantha was poking around online when she stumbled upon the article, New research suggests hysterectomies may cause memory problems.

“It’s about a first of its kind study conducted in rats (not humans), but the implications that our uterus plays a role in memory is just really interesting. I found it worth sharing because having an explanation gives women like us validation for having memory loss. It is nice to have some scientific acknowledgement of what we are going through.”

Newly published research has challenged a long-standing belief in the medical community that uteruses serve no purpose in the body except pregnancy. When researchers at Arizona State University performed hysterectomies on rats, the animals’ memory suffered.

Samantha’s Solutions: Coping Skills and Lessons Learned

Samantha now works for the federal government to protect and rebuild habitats for sea birds and sea ducks, specializing in restoration after oil spills. She shares some of the memory loss coping skills that she employs:

  1. Become a note taker: I take a lot of notes. I use a bullet journal. I now have a huge collection of hundreds of notebooks I’ve filled and it keeps growing, but it’s working for me.
  2. Keep a “done” list: Every day I write down not just to do lists, but “done” lists – so I remember that I did something. I capture calls I made, e-mails I sent, discussions and conversations I had.  My “done” list is my biggest coping strategy. My short term memory was really impacted from my chemo and the early menopause that resulted, so my journals and my “done” list are my recall mechanism. 
  3. Be proactive when it comes to therapy: My therapist has been amazing in coaching me to not beat myself up and to move forward and to be okay with not being okay. I had a hard time being weak – not just physically, but mentally weak. I’m a huge advocate of starting therapy early, when starting treatment, to get ahead of the roller coaster ride. I’d fallen into a severe depression after treatment was over, and I wish I’d started therapy earlier. 
  4. Don’t be afraid of medication: Medication has helped me battle my depression and panic attacks. My body doesn’t create estrogen and progesterone anymore. That makes a person crazy! It is not in your head! 
  5. Find your escape: I read a lot to escape. I’ve started meditating. I also started art therapy and do woodworking and jewelry making. I recently learned how to weld. I’ll never forget when I was in treatment and a social worker was trying to talk to me about art therapy and painting. I was like ‘screw you, I’m dying here.’ But now, years later, art has been my coping mechanism. It has become my sanity. (But I will never tell someone that during treatment! Only after!)

Eight year cancer survivor Samantha is a wildlife ecologist in San Diego, CA. When she is not protecting sea birds and restoring habitat for sea ducks injured by coastal oil spills, she volunteers with Burning Man and has attended the art festival 5 times. Learn more about Samantha’s Cervivor Story here.

Happy Birthday in Heaven, Teolita

In My Heart Always to Stay

Loved and Remembered Every Day …

Happy Birthday in Heaven

Teolita Schenese Rickenbacker

September 19, 1980 – August 24, 2019

You left this world long before I had planned for you to go,

Our time to say goodbye came way to soon.  

After being diagnosed with Stage 4 Cervical Cancer,

Teolita welcomed life with open arms and met all challenges head on.

Teolita had such drive, resilience, passion and determination.Nothing could stop her when she set her mind on something.

Our time to say goodbye came way to soon.

Teolita was relentless in her effort to become knowledgeable about cervical cancer, not just for herself, but to help raise awareness about this type of cancer and the importance of women’s health screenings. She became an Ambassador with Cervivor, a nonprofit organization that brings cervical cancer survivors together and helps to spread awareness, education, support and more. Whenever or wherever Teolita was given an opportunity to speak, she would use that time to raise awareness about cervical cancer – considered a silent killer! 

In her speeches, Teolita would say, “What I want all women to know is make sure you listen to your body and seek medical attention if something isn’t right. You must be your own Advocate. Make sure you are following the guidelines regarding cervical cancer screening because it is preventable. Always follow-up with your doctor, if advised to do so. Do not let stigmas, lack of knowledge, or shame, prevent you from taking care of yourself.”

To all cancer survivors or those fighting to recover from a cancer diagnosis, she would tell them “you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you would ever imagine. Never give up, never give in. You had cancer; cancer didn’t have you.”

As days and weeks passed, Teolita and I started feeling all alone. Then she reminded me of the words of encouragement that she got from my mother and her grandmother all through her life. We took everything to God in prayer. In my listening role, I heard Teolita say she needed God more at that time in her life, than ever before. She was able to find hope and encouragement, knowing that she did not have to deal with the challenges alone.  Through prayer, meditation, and support from family, church family, friends, and an amazing medical team, she found the strength to fight for life. 

During Teolita’s cancer journey, I reflected on the many roles that Teolita said I had in her life. She said I showed her many things that only best friends showed. I was her doctor, teacher, preacher, chastiser but most all, I was her mother and best friend. Later during Teolita’s journey, I had to add the role of caregiver. I had to support and care for my daughter who was independent, brave, strong and ready to meet the challenges before her, but her physical health was waning!  

Now, I have taken on two more roles. My new roles are to facilitate the completion of the book Teoltia started to write and to keep Teolita’s mission going. Her mission was to raise awareness about HPV and cervical cancer. She was committed to helping others by speaking, educating and advocating for HPV and cervical cancer!

Teolita orchestrated the life she loved and lived. Teolita did it well!

Love Always and Missing You,  
“Mommy” (Nina Rickenbacker Edwards)

If you would like to make a donation in memory of Teolita to help other Cervivors attend Cervivor School, please click here.

Una colostomizada en Honduras durante la pandemia de COVID-19

Honduras es un hermoso país tropical ubicado en el centro de Centroamérica. Honduras se jacta de hermosas playas, bosques, montañas y gente. Me encanta vivir en Honduras, simplemente ir a cualquier parte y poder ver las cadenas montañosas, y el cielo vale la pena.

A pesar de eso, un problema que muestran las estadísticas es que 991 mujeres son diagnosticadas con cáncer de cuello uterino cada año en Honduras, el cáncer de cuello uterino es la primera causa de muerte en las mujeres, después del cáncer de mama. Afortunadamente, en 2016, el gobierno hondureño aprobó la vacuna contra el VPH para niñas. Los centros médicos privados proporcionan la vacuna al resto de la población.

Cuando me diagnosticaron cáncer de cuello uterino, no sabía nada al respecto. Fui la primera persona que supe que tenía este tipo de cáncer. Después del tratamiento cervical desarrollé una fístula rectovaginal, una cosa más que no sabía que existía.

Para ayudarme a sanar o tener una mejor calidad de vida, mi siguiente tratamiento fue una colostomía temporal, otra primicia en mi vida. Realmente sabía poco sobre ostomías; conocí a una persona que se sometió a una y nunca habló de ello.

Una colostomía es una abertura en el intestino grueso que lleva un extremo del colon a través de una incisión a la pared abdominal. Eso fue lo primero que aprendí sobre la colostomía.

Mi médico fue de gran ayuda al brindarme material y apoyo, pero me sentí tan perdida. Me conecté a Internet para buscar información o cualquier persona en Honduras con una colostomía. No encontré a nadie con quien hablar de ello. Google y otros sitios web fueron mi lugar de consulta para obtener información y consejos.

Cuando llegó la cirugía y tuve que pedir mis bolsas de ostomía no tenía idea de lo que estaba haciendo. Llamé a los hospitales de mi país y dijeron que tenían un solo y eso es todo. Entonces pedí por Amazon y compré lo que pensé que podría ser útil y más fácil de aceptar para mí (estuve en negación de mi ostomía hasta el día después de mi cirugía cuando sentí el alivio).

Comprar insumos en Honduras no es fácil, de hecho, llamas a proveedores médicos y ellos no saben lo que les estás pidiendo. Solo encontré un proveedor que comprende las ostomías, pero no proporciona la marca específica que necesito. La marca que uso no está disponible en Honduras.

Soy muy inflexible con mis suministros de ostomía, quiero estar cómodo y sentirme seguro. Me tomó un año encontrar mi pareja perfecta entre mi estoma y mi bolsa de colostomía.

Compro en línea en los EE. UU. Y me lo envían a través de un servicio de mensajería. Regularmente me toma 3 semanas llevar mis suministros a mi casa. Siempre planifico con anticipación y tengo suficientes suministros para 2 meses en cualquier momento.

Durante la pandemia, Honduras no estaba preparada para nada que viniera después de marzo. Todo parecía ser un caos cuando nuestro país comenzó a cerrarse. Dicho esto, cuando llegó la cuarentena, acababa de recibir un envío de mis suministros y, a mediados de abril, pedí más.

Pedí mis suministros habituales, no estaba preocupado, me había abastecido. Luego llegó junio y solo tuve suministros para la primera semana. No hay noticias de mi pedido. Innumerables correos electrónicos, llamadas y todavía no había recibido nada. Pedí más, por si acaso, con la esperanza de que este nuevo pedido llegara antes. Llamé y pedí innumerables veces mis pedidos.

Primero, llegaron tarde a mi mensajero, luego la aduana tardó meses en dejarlos pasar. Odiaba escuchar esta respuesta repetidamente: “Su paquete está aquí en Honduras, está en la Aduana y aún no ha sido entregado”. Tuve suerte de que un proveedor médico aquí tuviera suministros, pero como no son lo que necesitaba, los revisé rápidamente. Mis bolsas de ostomía tardaron 4 meses en llegar y el pedido llegó incompleto. Todavía estoy esperando el próximo envío y la finalización del primero.

La ansiedad me golpeó con fuerza en junio y julio. Estaba tan enojado porque esto estaba sucediendo. Me desperté un día llorando, porque las bolsas que estaba usando me estaban provocando una reacción alérgica en la piel.

Ese mismo día, mientras estaba deprimido por todo el lugar y haciendo que todos se sintieran miserables, recordé que todavía estaba aquí. Aunque esto era horrible y exasperante, todavía estaba aquí. Decidí dejarme arrastrarme por un día, dejarlo salir, liberarme.Al día siguiente me di una ducha larga sin bolsa y me puse una nueva, aunque la erupción todavía estaba allí, iba a revisarla y esperar a que llegaran mis suministros. Tenía que ser positiva.

Cuando finalmente llegaron aquí, lloré de nuevo (culpé a la menopausia). Fue como abrir un regalo de cumpleaños.

Ser ostomizado en un país donde se considera un tabú y hay poca información y suministros es tremendamente difícil. Soy increíblemente afortunado de tener una buena relación con mis médicos y, cuando tengo problemas, puedo enviarles un mensaje de texto y me responderán rápidamente. Tener este apoyo es de gran ayuda. Pero a veces necesitas el apoyo de alguien que comprenda física y emocionalmente por lo que estás pasando.Me tomó poco más de un año encontrarme con hondureños con ostomías. El solo hecho de saber que hay personas con una ostomía y que usted no está solo es útil. No los he conocido personalmente, pero estar abierto a compartir su historia ayuda a otros a abrirse a compartir la suya. El uso de las redes sociales ayuda muchísimo.

Mi ostomía me llegó debido al tratamiento del cáncer de cuello uterino. He llamado a mi estoma Jeepers, porque se me acercó sigilosamente. Soy un ostomado orgulloso, he aprendido a aceptar mi ostomía y a hablar de ello abiertamente. No debe ser un tabú o algo que nadie no pueda discutir.

Karla Chavez vive en Honduras, es ingeniera civil y entusiasta de los amigurumi. Karla es sobreviviente de cáncer de cuello uterino y de tiroides por 3 años y es una orgullosa ostomizada. Karla se graduó de Cervivor School en el 2019 y desde entonces es Embajadora de Cervivor y un apoyo clave para nuestra creciente comunidad de Cervivor Español.

Keep Up the Conversation About Vaccines, Even Amid the COVID-19 Pandemic

Recently, the FDA approved the HPV vaccine Gardasil 9 for prevention of head and neck cancer. Like cervical, vulvar, vaginal, anal and penile cancer, cancers of the head and neck are also associated with particular strains of the HPV virus. 

The original version of the Gardasil vaccine was approved in 2006 for girls and women between the ages of 9 and 26 based on data from clinical trials showing that the vaccine, by preventing HPV infection, could also prevent precancerous cervical lesions. This was expanded to prevention of other forms of genital cancer. But such lesions don’t exist in head and neck cancer – such as cancer of the tonsils and throat – so it was not clear how to prove the vaccine’s efficacy. So although the link to HPV was understood, cancers of the head and neck had been left off the list, until FDA’s June 2020 approval based on “surrogate endpoints”…and the epidemiologic evidence from use of the vaccine over the past 15+ years. 

This expanded FDA approval doesn’t change recommendations regarding who and when should get the vaccine. Here in the U.S. it is already recommended for females and males ages 9 through 45 to prevent cervical, vulvar, vaginal, and anal cancer as well as genital warts. But, it does expand the conversations we can have about the importance of the HPV vaccine, the cancers it can prevent, and the lives it can save. And, perhaps it will help bolster people’s understanding of why boys should get the vaccine (as if there weren’t enough reason already!).

Even – and especially – amid the COVID-19 pandemic we should continue to educate people about the HPV vaccine and remind them to ask for it for their daughters and sons, and/or for themselves. Why? Because so many routine healthcare visits have been cancelled or postponed, bringing a new level of complications to keeping up with recommended vaccines for individuals, families and clinicians alike.

According to the National Foundation for Infectious Disease, the overall number of well-child office visits was down by about 50 percent amid the pandemic. Vaccine manufacturers reported a decline in vaccine orders, and doses distributed through the Vaccines For Children program dropped significantly.

recent New York Times article reported an alarming 50 percent drop in measles, mumps, rubella vaccinations; a 42 percent drop in diphtheria and whooping cough vaccinations; and a 73 percent drop in HPV vaccinations, according to a pre- and post-COVID-19 comparison of electronic health records from 1,000 pediatric practices nationwide. We need to avoid future public health crisis by returning to vaccine schedules, as soon as we safely can.

Many physician practices are returning to non-emergency visits from patients and are putting new protocols in place to give vaccines while keeping both patients and practitioners protected from COVID-19 exposure. Some are even offering drive-up vaccine clinics so that children don’t need to come into the office to receive some vaccines, or at least, have the car serve as the waiting room until the exam room is sanitized to avoid exposures. 

The good news is that there is quite a bit of  flexibility in the HPV vaccine schedule, so being off schedule with healthcare provider visits doesn’t mean you are off schedule with vaccine doses. 

  • For children under age 15 who had received their first dose of the vaccine, they aren’t due for the second dose for 6-12 months, so there is a lot of flexibility in the time to reschedule. 
  • Children and adults 15 and older get a three-dose schedule, with the second dose following 1-2 months after the first, and the third dose at 6 months after initial injection. But the primary impact on efficacy is getting vaccines doses too close together, not spread out too far. The CDC writes in its summary of the recommended HPV vaccine schedule that “If the vaccination schedule is interrupted, vaccine doses do not need to be repeated (no maximum interval).”

What We Can Do

Remind women to keep up with their annual women’s health visits, including Pap and HPV tests. Remind parents of tweens and teens to not forget about getting their kids the HPV vaccine and all of the protections it offers. 

Life may look different. Schools may be different. Work may be different. But the need for vaccines remains unchanged, and the protective health benefit they offer more is critical than ever!

I’m Done With Treatment, But Treatment Isn’t Done With Me

I recently celebrated my 31st birthday. Around this time last year, I was a brand new 30-year-old enjoying summer with my awesome husband and 3 amazing kids. I never suspected that two months after I celebrated that milestone birthday, cancer would invade my life.

On the day my OBGYN found my tumor, I left her office sobbing. I walked the long way through the parking lot, sobbing. I didn’t care who saw me. The diagnosis was so hard to cope with. I couldn’t align myself with my new reality. I searched every part of my soul to come to grips with what I felt was the end of my life.

“I can’t have cancer. I’m young! My kids are so young! My husband’s going to be a widower, he doesn’t deserve this! My kids are going to grow up without me! They won’t remember me. I have so much left to do here,” I thought, my brain in overdrive. I felt betrayed by my body. 

Treatment was the longest, weirdest dream I’ve ever had

I began treatment. The plan was 6 rounds of chemotherapy, 30+ rounds of external radiation, and 5 internal radiations (brachytherapy). I now call treatment the longest, weirdest dream I’ve ever had because I felt like I was in a fog the entire time. My body was so weak. I barely ate. I slept all the time, but not deeply or comfortably. I felt restless. Thank goodness for my husband, my sister and my dad. They helped me daily. I remember trying to vacuum one day and nearly collapsing. It was so hard to take a back seat to everything. From not working or doing basic chores to watching as others took care of my children daily. That wasn’t me. Everyone who knows me knows that I am fiercely independent.

At the beginning of treatment, I had hand-drawn a calendar to count down to when I’d be done. With each day that passed, no matter how weak I felt, I always remembered to make another “X” on the calendar. It was a long 9 weeks. Treatment ended for me on December 13th, 2019. It was a Friday, and I joked that this nightmare was ending on Friday the 13th. To live up to its name, on that day – my last round of external radiation – the radiation machine that worked so faithfully all those weeks was broken. I stood there with my family (who all came for my last day) and waited around with a full bladder – which was the requirement before receiving radiation – for over an hour. I remember thinking, “Can’t I just get this over with?! I’m so ready!” Right at my breaking point, I heard my name over the intercom and 10 minutes later, I was done. I said goodbye to the amazing doctors and nurses who took care of me all those weeks.

I did it! I’m done!  I can move on forever. Or so I thought…
How naive I was to think that! I’ve learned over the past months that even though I’m done with treatment, treatment is not done with me. I’ve dealt with a plethora of side effects:

For a whole month after treatment, I had what felt like a never-ending UTI.

My bowels are a mess.

What I thought was an upset stomach one late February night has proven to be another side effect from radiation.

My joints ache.

My body doesn’t feel like a 31-year-old. I’m going through menopause! The physical symptoms are many, but the mental stuff is particularly hard. There are highs and lows. I’ve lost two friends over the past few months to cervical cancer. It does something to you to see other women with the same disease pass away. My heart breaks daily for their families.

NED (but there is still the physical and mental evidence of my cancer)

I had my first post-treatment PET scan in March and received the wonderful news that I had “No Evidence of Disease.” In the cancer world, “NED” is a term everyone wants to hear.

NED brings people to their knees.

We rejoice. We celebrate. We still worry, of course. I think I always will, and the aftereffects of treatment continue to bring challenges. But having cancer has given me the gift of perspective. I gladly accept each day that comes. I am thankful for my family and friends. I am thankful for all of the small things that bring me joy.

Even with everything I’ve been through – all the procedures, side effects, and pain – I’d do it all again to be here with my husband and children. I’d do it a thousand times over.

My body: How can I not love something that has fought so hard for me to be here?

I am most thankful for my body. I’m proud of it for everything it has been through and how it still keeps going. All of my physical insecurities have been put to rest.

How can I not love something that has fought so hard for me to be here? That’s what I am. I’m here.  I’m still here! 

About Natasha:

Natasha is full time work-from-home/homeschooling mom of three who enjoys taking photos of anything and everything, traveling, reading multiple books at the same time, and finding new places to show her kids. Read Natasha’s Cervivor Story here.

A Colostomate in Honduras during COVID-19

Honduras is a beautiful, tropical country located in the center of Central America. Honduras boasts of beautiful beaches, forests, mountains and people.  I love living in Honduras, just going anywhere and being able to see the mountain ranges and the skies are worth it.

Nevertheless, statistics show that 991 women are diagnosed with cervical cancer each year in Honduras. Cervical cancer is the first cause of death in women next to breast cancer. Fortunately, in 2016, the Honduran government approved the HPV vaccine for girls. Private medical facilities provide the vaccine for the rest of the population.

When I was diagnosed with cervical cancer, I did not know anything about it. I was the first person that I knew that had this type of cancer. After cervical treatment I developed a rectovaginal fistula. One more thing I did not know existed. To help me heal or have a better quality of life, my following treatment was getting a temporary colostomy. Another first in my life. I knew little about ostomies; I met a person who had an ostomy but he never spoke of it.

A colostomy is an opening in the large intestine bringing the end of the colon through an incision to the abdominal wall. That was the first thing I learned about a colostomy. My doctor was extremely helpful in giving me materials and support, but I felt so lost. I went online to look for information or anyone in Honduras with a colostomy. I did not find a person to talk to about it. Google and other websites were my go-to for information and tips. 

When surgery came and I had to order my ostomy bags, I had no idea what I was doing. I called hospitals in my country and they said we have this type and that is it.  So, I ordered from Amazon, and bought what I thought might be helpful and easier for me to accept (I was in denial of my ostomy up to the day after my surgery when I felt the relief).

Buying supplies in Honduras is not easy, in fact you call medical suppliers and they do not know what you are asking them for. I’ve only found one supplier that understands ostomies but does not provide the specific brand I use. The brand I use in not available in Honduras. I am very adamant about my ostomy supplies; I want to be comfortable and feel safe. It took me a year to find the perfect match with my stoma and my colostomy bag. I buy online in the U.S. and have it sent to me via a courier service. On a regular basis it takes three weeks for me to get supplies to my house. I always plan ahead and have enough supplies for two months at any given time. 

When COVID-19 made its way to us, Honduras was not ready for anything that came after March. Everything just seemed to be chaos as our country started closing up. With that being said, when quarantine came, I had just received a shipment of my supplies and in mid-April I ordered more, the usual amount, I wasn’t worried, I had stocked up. Then June came and I only had supplies for the first week and no news of my order. Countless emails and calls, and I still had not received anything. I ordered more, just in case, hoping this new order would get here sooner. I called and asked countless times for my orders. First, they got to my courier late, then customs took months in letting them through. I hated listening to this response repeatedly: “Your package is here in Honduras, it’s in Customs, and it has not been released yet.” I was lucky that a medical supplier here had supplies, but since they are not what worked best I went through them quickly. It took my ostomy bags four months to get here, and the order came incomplete. I am still waiting for the next shipment and completion of the first. 

Anxiety hit me hard in June and July. I was so mad that this was happening. I woke up one day crying, because the bags I was using were causing an allergic reaction to my skin. That same day, as I was moping all over the place and making everyone miserable, I remembered that I was still here. Even though this was awful and infuriating, I was still here. I allowed myself to grovel for one day, let it out, release. The next day I took a long bagless shower, and placed a new bag on, and even though the rash was still there, I was going to go through it and wait for my supplies to get here, I had to be positive. When they finally did get here, I cried again (blame it on the menopause). It was like opening a birthday present!

Being an ostomate in a country where it is considered a taboo and there is little information and supplies, is awfully hard. I am incredibly lucky that I have a good relationship with my doctors, and when I have issues, I can text them and they’ll get back to me quickly. Having this support is extremely helpful. But sometimes you need support from someone who understands physically and emotionally what you are going through. It took me a little over a year to meet Hondurans with ostomies. Just knowing that there are people out there with an ostomy and that you are not alone is helpful. I have not personally met them but being open to share your story helps others open to share theirs.  Using social media helps a whole bunch.

My ostomy came to me due to cervical cancer treatment. I’ve named my stoma Jeepers, because he creeped up on me. I am a proud ostomate, I’ve learned to accept my ostomy and to talk about it openly. It should not be a taboo or something someone cannot discuss.

Karla Chavez is from Honduras and she is a civil engineer and amigurumi enthusiast. Karla is a 3-year cervical and thyroid cancer survivor and a proud ostomate. She is a Cervivor Ambassador, a 2019 Cervivor School graduate and is a key support to our growing Cervivor Espanol community.

Gratitude Awakening

Dogwood in bloom.

A sense of deep gratitude is something that I have carried with me since finishing treatment for cervical cancer. Especially during those first phases of recovery when you feel like you’re stepping out of the fog and back into the world. It was overwhelming to go outside and have my lungs fill with fresh air, feel sun on my skin, and to finally have an ounce of energy with which to enjoy it. I would walk my dog every day and take it all in with my (cautious) sense of victory over cancer. No phone to distract me, just the awe of what once felt so mundane.

Cervivor School Cape Cod 2018

Like so many of my Cervivor sisters, I had a complete shift in my mindset after going through cancer. There’s a level of gratitude attained after being isolated and having your mortality hanging over you like a dark cloud every single minute.

The sick feeling is so strong that it’s hard to imagine ever being able to feel better. I remember spending those hard days thinking about what I would do once it was all over. I mainly daydreamed about family gatherings with yummy meals, or spending time out in nature. The shift in mindset also pertained to relationships. I was alive, and ready to live my best life. That meant deciding what, and who, was worth my time and effort. It meant ditching behaviors that didn’t serve my purpose, and creating boundaries where needed to stay true to what was important to me.

In this uncertain time of the COVID-19 pandemic, the whole world is getting a taste of what it’s like to be threatened by their environment, stuck with their worries and no sense of control over any of it. I see friends beginning to talk about what they’ll do after this is over, and what I see is so similar to my own experience. People aren’t talking about going on a lavish vacation; they just want to get their nails done. Or hug a neighbor. See a movie in the theater. Catch up with friends in person. Not have to disinfect groceries. Normal, everyday activities that were previously taken for granted are now desperate aspirations. That is what it feels like all the time for those fighting cancer, but at an even more basic level. Personally, I dreamed to be able to walk four feet to the bathroom without breaking a sweat. Not having to be bathed by my partner while holding the wall for support. Feeling fresh air on my face and having real light shine down on me after recovering indoors for so long. Walking up a flight of steps all by myself. Holding down food. I learned that being mad about my situation didn’t make it go away. There was no workaround. The only way out was through. 

Pretty Azaleas blooming in my yard.

Having been faced with all that and making it through to the other side, I was going to start living my life unapologetically and with a renewed sense of appreciation for what matters at the core. When you can no longer do such simple functions, you learn what matters in life, and what really doesn’t— like the ten extra pounds gained from coping with a very scary time.

My hope is that when the pandemic is over and everyone can come out of their homes and go back to work, that a prevailing sense of gratitude will make the world a bit softer of a place to be, for the short time that we’re here to enjoy it. I hope people will see that the time to live your life is now. I hope when regular life resumes, and it will be that ever present “new normal” us cancer survivors so often speak of, that people don’t forget what it was like to have the rug yanked from under them by circumstances beyond their control. Hard times make us strong and perspective, makes us compassionate. I am grateful that we still have the wonder of the outdoors to soothe our souls, Zoom to see our friends, and for the people working so hard to keep us safe and healthy. 

Mary Baker is a three year survivor of stage 3B cervical cancer. She is an advocate for women’s health, a mom of two and proud Cervivor Ambassador and Cervivor School graduate. 

New Cervical Cancer Screening Guidelines: the Good, the Not-So-Good & the Need to Educate

Recently, the American Cancer Society updated its cervical cancer screening guidelines. There are significant updates that we as survivors and advocates should be aware of.

The new guidelines recommend initiating cervical cancer screening at age 25 and that primary human papillomavirus testing (HPV testing  alone, without the Pap test) every 5 years be the preferred method of testing through age 65. This is a significant update to the previous ACS guidelines, released in 2012, which recommended screening starting at age 21 with the Pap test, then at age 30+ screening with the Pap plus HPV test every five years.

The Good:

  • The proposed shift to fewer, less frequent testing starting at a later age, is in large part due to the broadening adoption of HPV vaccination in the U.S. and the impact HPV vaccination has on the public health landscape. This is good progress from where we were a decade ago! With more and more of the population vaccinated against HPV, screening should and will evolve.
  • Compared with today’s current approach (Pap testing alone beginning at age 21 and switching to Pap+HPV co-testing at age 30) the ACS reports that starting with primary HPV testing at age 25 “prevented 13% more cervical cancers and 7% more cervical cancer deaths.” This could be achieved “with a 9% increase in follow-up procedures, but with 45% fewer tests required overall.” 

So for women who despise the stirrups, perhaps this is good news. But…

The Not-So-Good:

The data that ACS shares is good news: preventing more cervical cancers and preventing more cervical cancer-related deaths are goals we all share. But as survivors of cervical cancer – many of us young adults when we were diagnosed – our lived experiences don’t ring true with the ACS’ recommendation to delay the start of testing to age 25, with a 5 year interval between tests. 

Our top line concerns:

  1. Many of us were diagnosed in our early 20s. It may not be the “statistical norm,” but we know from direct experience that it is our norm. Delaying the start of cervical cancer screening to age 25 is concerning.
  2. While we are proud of the strides in uptake of the HPV vaccine, the National HPV Vaccination Roundtable reports that at this time, approximately 65% of teens in the US have received the first dose. But we are not “there” yet. ACS is changing its recommended guidelines based on the successful adoption of the vaccine, but we believe this needs to be accompanied by ongoing concerted, collaborative efforts and education to continue to increase the vaccination rate. 
  3. We remain concerned that the five year interval will separate women from their healthcare providers. For many women, an annual health visit is the only time they see a health care provider – and so many discussions and screenings happen beyond a pelvic exam. We are concerned that 5 year screening intervals have the unintended consequence of women further delaying visits to a healthcare practitioner. 
  4. To put it simply, we are concerned that with this long interval, far too many women will fall through the cracks. Will miss follow-ups. Will miss screening altogether. We are particularly concerned how this impacts the racial disparities that already plague this disease. We are concerned about any unintended consequences and want to make sure they are fully understood and vetted by policy and guideline experts. 

The guidelines were just released by ACS in early August and are still being absorbed and debated across the cancer community. While these new guidelines point to the future of cervical cancer screening in a post-vaccine world, these changes will not be immediate. In fact, the guidelines specifically clarify that using HPV testing in combination with a Pap test (“co-testing”) every 5 years or Pap tests alone every 3 years “remain acceptable options for now, as not all labs have transitioned to primary HPV testing.” It is no surprise, however, that the downstream impact of broader HPV vaccination is a change in screening practices. But what doesn’t make sense is the lack of education to accompany these guideline recommendations.

Our Key Take-Away: Our Stories Have Never Been More Important

Now more than ever we need to elevate our voice, educate and share our stories. As cervical cancer survivors, we and we alone can speak with unique authority about the disease and how it affects lives. 

As a Cervivor community, we know the need for ongoing education about cervical cancer prevention and screening. We need more women to understand why they are getting screened, what Pap and HPV tests are looking for, what results mean, and what the recommended testing intervals are. We need to make sure that women appreciate that a change in recommended intervals for a pelvic exam does not mean the end of annual health visits. 

Importantly, we need to encourage and educate women to be proactive participants in their own health

To engage their health care providers in conversation. 

To ask questions and to seek clarifications. 

To engage in discussion and shared decision making with their healthcare team. 

To trust their bodies if they feel like something isn’t right. 

With policymakers, we need to ensure that within any guideline shift there is room for consultation and shared decision-making for women and their healthcare providers. 

Rest assured, your Cervivor leadership is in the process of engaging in discussions with policymakers, providers and experts to seek clarity and fully understand the guidance and its impacts. But what remains essential is our proactivity in sharing our stories. In being the voice and face of cervical cancer. In making the disease real and un-ignorable and un-stigmatized. In being a force of education. 

ACS may have new statistics, but we have the stories. And our stories have power. Our stories tell the “why” behind screening. Our stories are what make screening relevant to women. 

Now more than ever, share your story. 

Remind women to keep up with their annual health exams and cervical cancer screenings, at whatever interval they’ve discussed with their provider. 

Encourage young women to get the HPV vaccine. Encourage parents to get their tween and teenage girls and boys vaccinated.

Our stories and voices have an impact. Our stories help educate women. Our stories help inform policy. 

Our stories will help end cervical cancer.  

35 Hospital Bracelets: Symbols Of My Journey With Cervical Cancer

“35 Bracelets”? I am not referring to beautiful gold bracelets that one wears to symbolize something special, or gifts that people give to one another as a symbol of their relationship.


I am referring to 35 hospital bracelets. I was given one each time I had an external radiation treatment. It has been 11 years and 2 months since I was declared cancer FREE, and I still have them.  


Why? As a reminder of where I’ve been, and every step I have taken since then. As a reminder of every single treatment that I had to go through to fight cervical cancer. As a reminder that at one time I was identified by a bar code with numbers. As a reminder of coming face to face with my own mortality. As a reminder of the person I’ve become today. As a reminder to share my story to prevent other women from going through what I did.  

Many cancer patients document their journeys either by writing on their journals, blogs or by taking pictures while going through treatments. Well, I have to say, I didn’t do any of those things. I didn’t write about it, talk about it,  nor did I take pictures of myself while in treatment. Yet, I know it did happen. I have the memories and the scars.


I guess these 35 hospital bracelets tell part of the story, but the memories of my journey are embedded in my mind. I remember what it took for me to get out of bed every single day to go for treatment, I remember every machine used on me and I remember every needle that went through my skin. I don’t put away these hospital bracelets in a closet where I don’t see them. I have them in plain sight. They hang on the side of my refrigerator in a simple Rite Aid® plastic bag. 


Perhaps I can be more sensitive and put them in a nicer bag, but I wont.  That Rite Aid® bag is what I chose back then when I started collecting them one by one. They have been there all 11+ years, and will remain there as a reminder of the work I need to do as an advocate of this disease. I sometimes regret that I did not take any pictures, but at that time, it wasn’t even a thought. Pictures, journals, blogs even these 35 hospital bracelets can be destroyed or lost, but my memories will live with me for a lifetime. 

Patti is a Cervivor Ambassador and Cervivor’s Wellness Instructor. She is a retired NYPD police officer and an 11 year cervical cancer survivor. She resides in NYC with her husband of 21 years where she’s a Group Fitness Instructor and a Health Advocate.

I had data and statistics in my talks, but that wasn’t telling the story that would move people to action

Chair of the National HPV Vaccination Roundtable, Dr. Noel Brewer has given hundreds of talks at scientific conferences and meetings across the globe. He’s advised the Centers for Disease Control and Prevention and the World Health Organization on vaccination.  He’s one of the most cited researchers in the world. His credentials are impeccable, yet much of the time when he starts a talk, he defers to the experts: patients.

His solution: “Always have people speak who have had the experience. When someone speaks who has had direct experience with cancer, it clears out the mental clutter. It makes you feel. It sets the stage for the important work that will follow.”

Dr. Noel Brewer has shared Lisa Moore’s Cervivor Story hundreds of times to “help people grasp the importance of preventing cancer.”

“To hear about the diagnosis and that awful waiting period. About what they have gone through – the symptoms, the damage caused by treatments, the possible loss of fertility.  These are key parts of the story that survivors can speak about in a personal way that doctors, scientists and other experts simply cannot.”

“As scientists, we often talk about cancer in abstract and technical terms. We convey a lot of important information that doesn’t connect with people’s feelings and imagination. But how can we help people grasp the importance of preventing cancer?” reflects Dr. Brewer.

Dr. Brewer regularly starts his talks with the voice of Lisa Moore. Lisa died of cervical cancer in October 2017, at age 31. Yet through her powerful Cervivor story video, she has educated and impacted thousands.

“I had data and statistics in my talks and trainings, but realized I wasn’t telling the full story. So now, I leave that to Lisa Moore. In her video, she tells the story of her fight with cervical cancer. It’s one minute. It’s powerful. It’s heartbreaking. Every time I show the video, I’m moved by it. And I’ve seen it more than 150 times.”

“At first, Lisa is sitting. She is sewing. She tells her story in very simple and concrete terms. We see her partner in the background, watching her. Every time I show it, people pause and struggle to collect themselves. We sit with Lisa. We feel her pain and her call to action. We take a deep breath together, then we get focused on the work of what we are going to do to prevent cervical cancer.”

Lisa was a true champion for prevention. She educated and advocated and was telling her story…until she could no longer. Lisa lives on in her Cevivor story and in her video, and her passion for prevention and call to action has been seen, heard and felt by researchers, healthcare providers and policy makers around the world. Not just through Dr. Brewer’s use of her video into his talks, but by many others.

“I do many ‘train the trainer’ sessions about HPV vaccination, and connections happen based on Lisa’s video. People often come up to me after, asking if they could also incorporate Lisa’s video in their own outreach. Working with Cervivor, we’ve shared the video many times and amplified the reach of Lisa’s message.”

In video or in person, “Cancer survivors speak with certain authority,” says Dr. Brewer. “You are a moral voice on cervical cancer and all of the ways it affects lives. I don’t know anyone who can speak as powerfully.”

“We’ve shared her video at Cervivor events, and it has been seen and shared many times via our social media platforms. But Dr. Brewer is the one who has really helped to get Lisa’s story to the masses and I am personally thankful to him for that,” said Tamika Felder, founder of Cervivor. “Lisa wanted her story to be shared. She wanted the world to see that not only what cervical cancer had done and taken from her; but also, that it in fact it was not an easy cancer. She wanted her story to help get people vaccinated against HPV so they would not have to suffer the same fate. Dr. Brewer has helped me keep my promise to Lisa. For that I am forever grateful.”

Are you sharing your story?

If you haven’t yet, add your story to our Cervivor Stories. Write a blog post about your experience or your advocacy or about a milestone or simply a memory or reflection and send it to info@cervivor.org. We can publish it and add it to the voice and reach of our Cervivor blog.

As Dr. Brewer reminds us, stories matter. Stories motivate. Stories change minds. Our community’s work sharing our stories is powerful.

A professor of Health Behavior at the University of North Carolina Gillings School of Global Public, Dr. Noel Brewer studies health behaviors. He examines ways to increase HPV vaccine uptake, and his research led to the development of “The Announcement Approach” to train providers to communicate more effectively about HPV vaccination and other vaccines for adolescents. Dr. Brewer chairs the National HPV Vaccination Roundtable, which brings a wide cross-section of stakeholders together to raise HPV vaccination rates and prevent HPV cancers.

The Nurse Becomes the Patient

Karen is a breast cancer survivor, a cervical cancer Cervivor and a registered nurse (RN). She shares her unique perspective of being on “both sides” of the healthcare system – as a provider and a patient:

I was working as a nurse when I got “the call” – my gynecologist telling me over the phone that my Pap was abnormal and that I needed to have a biopsy. I didn’t get terribly scared at that time. I knew what a biopsy was. I knew what HPV was. I knew what an abnormal Pap was. “It’s just a biopsy looking for more information,” I’d reassured myself. When the results came back cancer, I wanted to vomit. 

The Google “black hole” that even nurses can fall into

Explaining everything to my family was emotionally hard for me. Before I could do that, I personally needed to have a plan, I needed to feel I was in control. I researched nursing school materials, cancer organizations, cancer statistics and treatment plans. I learned early that the last thing anyone with any type of cancer should do is “Google it.”

As a nurse, I had access to quality medical sources. I had credible people I could call. But the lure of Google is strong. As a healthcare provider, I’ve had patients get on blogs and forums and come to me scared by something someone had said – often something that had little to do with their own individual case. Google is a black hole for so many. Even for me at times, even with my nursing training. I’m thankful I had a network of friends who were also nurses to reach out to for information. 

The caregiver becomes the patient

As I began treatment, I was able to immediately bond with my oncology provider nurses and the surgery nurses. Many times, however, the care staff had to remind me that I was the patient and to stop trying to do things that I shouldn’t be doing! I’ve heard that doctors are the worst patients. I admit that nurses have got to be too. 

I think because I was a nurse, I tried to be particularly “helpful” when I was in the hospital receiving care. Having worked with residents and medical students before, I was very open to them watching and asking questions. I often told residents and medical staff in training that they can ask me anything, they just need to know that I don’t have a filter when I answer. I tell them the down and dirty truth!

As a nurse, not being in the position of caregiver can be a challenge. Many times nurses will put their own personal needs behind everyone else. So having my family and friends take care of me warmed my heart. Going through radiation and chemo treatment was difficult. I had nausea after chemotherapy (I can’t even look at a Goldfish cracker anymore). I had muscle spasms and diarrhea (I called it “liquid death”). My family and friends taking care of me showed me their love. There is a saying “what you give, you can get back tenfold.” I definitely felt swaddled in love. They even organized a fundraiser to help me with my expenses.

The endurance challenge of returning to nursing after cancer treatments

The first part of July 2016, I returned to my nursing job. I think this is one of the hardest jobs to return to after cancer because of the time on your feet and the endurance needed. What normally only took me 15 minutes would take me an hour to complete. My legs felt like I had concrete in my shoes. I needed to be able to go to the bathroom at a moment’s notice because of diarrhea and bladder issues. My body hurt everywhere. I had panic attacks that were debilitating. I felt guilty because I knew I wasn’t holding up to my standards of care. There were many times that I worried that I would make mistakes. There were also several times that my charting was done late because I couldn’t get to it with everything else going on. The best analogy that I can think of is “this is like running a marathon on crutches.”

Ultimately, I had to leave my job. I fell into a dark pit of depression and anxiety. 

The past few years since my cervical cancer treatments have been rough. I’ve had to have repeated biopsies because of abnormal Pap results. I’ve seen a gastroenterologist, a urologist, and an orthopedic doctor along with my psychiatrist and counselor. I’ve been diagnosed with radiation colitis that causes me severe abdominal pain and diarrhea. I’ve had to have my hip replaced because of a tear in the cartilage that wasn’t repairable due to the radiation. My depression and panic attacks are still debilitating. I also have been diagnosed with lymphedema of my right leg. I have to elevate my legs four times a day for 40 minutes – above my head, mind you! I also have to wear compression hose and hook up to a machine that pushes the fluid out of my leg every night.

These days I’m working at keeping my head together. It’s one day at a time, and sometimes, one minute at a time. With the help of my family, friends, medical teams, and my Cervivor community, I’m surviving.

Educating doctors and nurses about cervical cancer prevention

With the help of Cervivor and my training at Cervivor School, my goals now are to educate and advocate to general practitioners that they need to discuss HPV immunizations with every patient, no matter their age or sex.

My goal is to promote education to medical providers so that they will in turn educate their patients and friends on HPV prevention and the importance of the annual women’s health exam. I reach out to medical schools to connect with medical students and residents. I want to share my story with them, have them hear what I went through as both a nurse and a patient, and encourage them to be more proactive when it comes to cancer screening and prevention. I think being a nurse and speaking to them as a nurse and not just a patient can be particularly powerful.

Also, because of my nursing training I can be an effective communicator about HPV immunization and screening and will convey information in a way that people will understand. Like, when you talk about there being more than 400 different strains of HPV, only some of which can cause a cancer. I can relate it to different strains of the flu or the cold, so that people can grasp a little bit better idea of it. 

I am proud to say that I am a Cervivor Ambassador. My Cervivor school training has offered me the tools and understanding of how to listen to others’ questions and concerns and how to encourage them to talk to their providers about Pap testing, HPV testing and HPV vaccination. 

After all, If you don’t ask, your provider can’t answer.  

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. As of the writing of this blog post in 2020, she is a six-year breast cancer survivor and a, come June,  four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor

The New Normal

I don’t know if I can think of a saying I hate more than those three words. I have heard so many people say, with regards to COVID-19, that we need to get use to the new normal. There is nothing normal about any of this. It is not normal for my kids to not be able to have play dates, it is not normal that my kids school shut down and had to switch to distance learning, it is not normal to have to wipe down every single grocery item that gets delivered with Clorox wipes, it is not normal to not be able to hug your friends and family that do not live in your house and it is not normal to not be able to go anywhere. The list can go on. 

I have heard, “this is the new normal”, or “get use to your new normal” when it comes to my cancer journey too. But let me tell you, there is nothing normal about cancer. There is nothing normal about having a radical hysterectomy, there is nothing normal about having nine stent procedures, there is nothing normal about having to self catheterize, there is nothing normal about having a port inserted into your chest, there is nothing normal about losing your hair due to the poison being pumped through your body every three weeks, there is nothing normal about missing your kids’ activities, there is nothing normal about the strain cancer puts on your marriage, there is nothing normal about having a nephrostomy bag, there is nothing normal about the unexplained fatigue and there is absolutely nothing normal about having cancer

You know what does feel normal to me? The constant feeling that I am on a roller coaster except it’s not thrilling. You start off on the ride going extremely fast, your heart is beating out of your chest and you don’t know what is coming up next. Then your ride is steady as you weave around the turns. Up next, you climb the steep hill and then you speed down at full speed and you can’t catch your breath and you’re wondering when is this ride going to end. Right when you think it’s slowing down and you have a grasp on everything, it takes off again and you find yourself going up yet another hill and this time it has loopty loops. This is how I view my current journey with cancer; a roller coaster that I can’t get off and it doesn’t end. A ride that is full of up hill battles and twists and turns at every corner. Despite the gasping for air and the wind in my face feel, I know that this roller coaster is just a detour. The girls love roller coasters and will ride anything they are tall enough for so good thing my roller coaster doesn’t have a height requirement or limit of people because I have the best group of people in my corner. So until my current roller coaster comes to a happy ending, you will find me sitting front row with my arms in the air and the wind in my face. 


Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.

Erica is not physically here, but she is entirely present in the very fiber of what we do at Cervivor

Today marks what should have been Cervivor Ambassador Erica Frazier Stum’s 35th birthday. 

She died December 27th, 2018 from cervical cancer. Yet her passion, her fight, and her spirit live on in Cervivor. Her zest for life, and her never backing down when things get tough, live on in me and in so many of us in the Cervivor community. 

Erica told me many times that she did not believe in an afterlife. She believed in THIS life. Even when she was losing hers. Even when cancer was taking her away from us bit by bit, she was living her life and sharing her story. In fact, she created for herself a “living life list” – deliberately not calling it a “bucket list” but rather an active, living and breathing list of experiences she wanted to have and things she wanted to do in what she knew would be a final chapter in her young life.

She did not get to complete all of the items on her living life list. But in me, in you and in Cervivor, her work continues. Her story, her heart and her passion are in the very fiber of what we do at Cervivor each time we support each other, each time we educate, and each time we share our stories. For me, Erica is not physically here…but she is entirely present.

I wrote Erica a birthday letter today and decided to share it with our Cervivor community. Those of you who knew her may share in my thoughts and reflections. Those who are  dealing with cervical cancer or its aftermath can, I hope, take comfort in her story. Those of you who have lost a loved one can I hope share in the appreciation that our loved ones are still with us, even when they are gone. 

Erica would not like the use of terms like “battle” and “lost.” She would not tell you that she was a “fighter.” In her mind, she was simply a “life liver.” She lived with purpose and meaning and passion. ” I tried to do my best to honor her in that way. This is for you, Erica.

Dear Erica,

I remember meeting you. We were in touch via email at first. You were preparing to head to our Cervivor School in San Diego in September 2015. You were sick. I told you not to come, as I was concerned about you getting on a plane. You came anyway. You couldn’t stay away – despite or because of everything, you wanted to more directly engage in our work and our mission. You challenged me. You challenged yourself. You challenged the world. And you changed it. By the end of 2016, you’d attended four Cervivor Schools – to not only keep honing your own advocacy and story-sharing skills, but to serve as a mentor to other Cervivors. In the midst of  dealing with this disease, you became our Lead Cervivor Ambassador. You became one of our most dedicated patient advocates. 

While fighting to end cervical cancer, you were losing your life to it. Yet, even when your diagnosis was clear that the cancer was terminal, you shared, you educated and you advocated. You did this from home, from your hospital bed and then ultimately, from your hospice bed. In your life and in death, you are a testament to why our work matters.

Erica, you would be so proud of Cervivor and all of the work we are doing as a community. Despite this pandemic, we’ve creatively found new ways to connect, educate and support each other. (You would have been all over the virtual scavenger hunts!) You would be so proud of your family. Your husband JR has shared  your story and motivated so many to get the HPV vaccine for themselves and their children. Your parents and siblings remain actively engaged with us, hosting fundraisers and  donning teal and white on Tuesdays then sharing posts on social media to inspire and educate. Your closest friends have shown up in so many ways. Gretchen even got the HPV vaccine. And, yes, they are on message! Mallory makes sure of that. And Wylee. Your son. He’s so big now. You would be so proud. 

Erica, you would be devastated to know that cervical cancer still takes its toll. That women here in the U.S. and around the world are still losing their fertility – and their lives – to this entirely preventable cancer. I know you would be angry as hell. And I know that frustration would fuel you to action. I know you would remind all of us to keep going, and keep educating, sharing and advocating and never give up, no matter how sick and tired (literally and figuratively) we might be. 

You’d be proud of our recent Cervivor School graduates, our Cervivor Ambassadors, our story-sharers, and the members of our online communities who post and share and support in an ongoing conversation that serves as a lifeline for so many of us. There is so much of you in each of them. In all of us.

You are not physically here, but your story, your words, and your message is still comforting people, educating people, changing hearts and saving lives. We miss you.

I miss you. 

Join me in honoring Erica today by creating – or adding to – your own living life list. She’d want us to live fully, embrace new experiences, tackle challenges, support each other, and plug into our skills and passions to end cervical cancer.

Happy Birthday, Erica. 

xo Tamika 

Beads with a Purpose: To “Feel that Person in Your Heart”

When Chanel’s mother passed in 2018 of a heart condition, she was beside herself with grief. When Chanel had gone through her cervical cancer treatment, her mother had been her rock of support. “My mom was the first person I called when I found out. She slept with me in the hospital. She cooked for me and my family while I was recovering.” Her grief launched Chanel down a unique path of remembering loved ones, celebrating survivorship and celebrating life.

“I was reading an article about dealing with grief, and one piece of advice it gave was to take up a hobby,” said Chanel. “I love jewelry and accessories, so I bought some beads, watched some classes on YouTube and started making bracelets and necklaces.”

Today, her bracelets celebrate the fight against cervical cancer and memorialize those we’ve lost.

“At first, I started making my bracelets in all colors. Then I found some cancer awareness charms online and incorporated those. Then cervical cancer awareness month rolled around, and I went teal and white.” Today, her whole workspace is teal and white. “I even found a teal desk chair,” Chanel shared proudly.

As she crafted, her bracelets became more personal.

Chanel felt alone when going through her cervical cancer treatments in 2013 (read Chanel’s Cervivor Story) until she found Cervivor’s Facebook page. She posted, looking for women close to her in Atlanta. A fellow Cervivor, Teolita, replied right away. They connected, chatted and befriended each other. Teolita and her mother were planning a cervical cancer awareness event and extended an invitation. Chanel attended, armed with teal and white bracelets “to give out and to bless women with.” She, Teolita and Deborah – another Cervivor in the area who she quickly bonded with – took a photo together, smiling proudly about the successful event at which they were able to share their stories and educate about cervical cancer prevention.

Today, that photo sits on Chanel’s desk.

Today, Chanel is the only one of the three still with us.

Teolita passed in August 2019. Deborah just recently lost her battle with cervical cancer in April 2020.

“It hits me hard, every time I look at that picture. I am the last one. ‘Don’t go into survivor’s remorse,’ my pastor counseled me. I figured the Lord must have a reason for me to still be here. I knew I needed to be active in the cervical cancer survivor community and to get the word out about cervical cancer prevention. I knew that was what Teolita and Deborah would want.” She made use of her photo to make charms, then made a bracelet with a photo charm of Teolita, a photo charm of Deborah, and angel wings. She shared them with their families. She saw the meaning it brought.

Today, Chanel is a passionate advocate for cervical cancer prevention. And, her bracelet making has become a small business as she fills orders for photo charm bracelets and survivorship bracelets from members of her church, her friends, Cervivors, and for people who find her on Facebook or Instagram. Chanel’s bracelets are not just for memorial purposes, but also to celebrate survivorship – like the bracelets she’s made with a boxing glove charm and the words “fighter” and “survivor.”

“These bracelets have meaning. That’s why I love doing this. When you wear them, you feel something in your heart.”

The memorial bracelets in particular are her special way to support people grieving.

“I don’t make these so that people should feel sad. I make them so that people can feel that person in their heart, can still feel close to the person and can still cherish their memory. I love making these because I know what they can mean to someone.”

“People have told me they often cry when they receive my bracelets. But I’m not trying to make people cry. I’m trying to celebrate life.”

Chanel lives in Conyers, GA and is always looking to connect with Cervivors in the area. Read her Cervivor Story and see more of her bracelets on her Facebook or Instagram.

Surviving Through Music

Our world is feeling great pain and uncertainty right now. Cervivor created a music video to show hope, love and strength within our cancer community but it reaches far beyond cancer — the message is truly universal.

The song that inspired this video, The Will to BE, was written by my caregiver and husband Pete. I love being married to a musician because our house is always filled with great music. Pete says that creating music from his heart for the world to hear, makes him feel like in some small way, he’s creating happiness.

During my cervical cancer diagnosis, multiple treatments and surgeries and three reoccurrences, Pete’s music truly lifted me up and gave me the spark I needed. His music was always on my ‘Chemo Playlist’ and I’d listen to it when I just needed to calm my mind and body.

Cervivor created a music video to show hope, love and strength within our cancer community but it reaches far beyond cancer — the message is truly universal.

Pete also knows all the women of Cervivor through their stories. These stories are the fabric of this song, weaving through emotions we carry as cancer patients, survivors and thrivers.

In 2017, California was experiencing literal storms and relentless rainfall. Everything around us was falling apart with no end in sight. During one of those storms, Cervivor founder, Tamika Felder asked Pete to write some music for Cervivor. 

He immediately drew parallels with the storms and cancer which inspired the opening lyric, “Been a long rainy season. The tides and winds headstrong. It batters our lives and we don’t know for how long.”

When you have cancer you give up a lot normalcy in your life and it doesn’t change when or if your cancer ends. You look at life differently; you are navigating through uncharted waters. 

Sometimes you’re drowning in fear and it takes every ounce of strength to get through the day. We hold on to hope, this four-letter word that becomes our lifeline. 

This song speaks to anyone who has faced deep hardships. The women featured in this video are beautiful and real. We are your neighbors. We are sisters, daughters, mothers, aunties and cancer is forever part of our lives. But we refuse to let cancer define us. We are living our lives and not forgetting what brings us joy.

The Will to BE is a song of truth and unpredictability but importantly the will to be loved and strong and needing to belong.

We hope that this song and video will fill your heart and show you that despite what cancer takes away, it leaves space for us to fill with gratitude and hope.

Pete and Cervivor Ambassador Carol live in Northern California with their fur baby, Ace the Dog, who can be usually be found at Pete’s feet in his music studio. They also have two amazing grown kids, Michael and Sydney, who are Carol’s inspiration to thrive.

When I was young, I was a Girl Scout – which meant selling Girl Scout cookies (of course)!

I have a vivid memory of sitting in our laundry room, door shut, with (somehow) the phone pulled in there too as well as the family address book, and the school and church directories…calling pretty much everyone we knew to see if they would spend their money buying cookies from me.

My mother made me do it. “It’s good for the cause and good for your character to do this,” she said.

I hated it.

I did not like the feeling of cold-calling people; not sure if they would know who I was much less say yes to buying cookies from me. It made me nervous. It made me anxious. It was unpredictable. I would much rather have done anything rather than spend time asking people for money.

I hated it.

For the record – I sold the most cookies in my troop that year, and the prize for doing so was a new boom-box!

Fast forward 30-some years…my willingness to do something uncomfortable (and my mother’s insistence that I do so) has paid off. I’m not so hesitant to ask for money these days, especially if it’s a cause that:

● I believe strongly in,

● One where I know the money goes, and

● One that directly impacts lives AND change.

Cervivor is that organization, and I consider it a badge of honor to volunteer for, represent, and fundraise for all it does and stands for.

As a part of Cervivor’s leadership team, their Lead Advocacy Educator and a Cervivor Ambassador, I get the privilege of seeing firsthand not only what we do as an organization, but where generously donated funds go. My history with this organization began because of such funds as I was the recipient of money that allowed me to attend my first Cervivor School in 2015. After attending that school, I began to see the positive impact Cervivor has not only on individuals and the greater community but also the impact it has on change. Cervivor is an agent of change. So much so that over the course of 5 years I’ve been able to become a part of that change by having the tools, motivation, confidence, and opportunities to share and leverage my HPV and cervical cancer story in many ways and to many people. I’m also able to be a part of helping others experience this too.

The work that I do for Cervivor, the hours and hours I spend volunteering my time, fulfills me because I not only see change happen, but I get to be a part of training and supporting patients and survivors of cervical cancer which ultimately enables them to become a part of that change as well. In essence, I get to not only see the change, but I get to see it grow too! My primary role as the Lead Advocacy Educator is putting on Cervivor School each year to train new advocates, but I also work to sustain their advocacy efforts and education indefinitely after they leave Cervivor School through routine Cervivor Ambassador calls, mentoring others to share their stories and advocate, hosting Cervivor Chats with experts that impacts our advocacy, and more. I’ve become passionate about training others to be advocates not only because I see that it empowers them as individuals in their own lives, but because I get to see the increasing change in our collective work to eliminate cervical cancer one day.

So now it’s time for me to do the very thing I hated doing so many years ago – ask for money. This time I do so with confidence, pride, and love because:

● I strongly believe in the work we do at Cervivor – otherwise I wouldn’t dedicate so much time and energy into it myself!

● I know where the generously donated money goes – I help to plan and organize just that!

● I see how it impacts lives AND change – I’m living proof of it!

And no, my mother is not making me do this :-).

Will you please donate to Cervivor and help us continue all of our efforts to be a part of eliminating cervical cancer?

For the record – I’ve raised over $3500 for Cervivor and the prize for doing so is impacting lives AND change!

Heather Banks is Cervivor’s Lead Advocacy Educator and recipient of the 2016 Cervivor Champion Award. As a 12-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 15 and 12.

“I Looked in the Mirror and Saw a Warrior Looking Back at Me” – Video & Interview

Becky, a young mother from California, came to Cervivor School in September 2019 to learn how to fully and effectively share her cervical cancer story. Just two months later, she faced a recurrence: a diagnosis of an aggressive cancer in her liver and pelvis. Becky shows in a Cervivor story video what it means to embody the Cervivor Spark. Amid her devastating news and the restarting of chemo, Becky gathered her daughters, family and friends to join her in shaving her head. We spoke to Becky about the video, her inner strength, her Cervivor Spark and how shaving her head in an empowering way enabled her to see herself as a warrior.

Shaved Head and Cervivor Spark in the Throes of a Cancer Recurrence: Q&A with Becky

1. How did you first find Cervivor?

I stumbled upon Cervivor on one of my many late nights on Google, searching for information. Crying by myself in the middle of the night, I found Cervivor.org and the stories that so many women have shared.  I sat awake in bed the whole night reading story after story. For the first time since my diagnosis – a very dark, scary and lonely road –  I finally found someone who had gone through what I was going through. I related to somebody! I joined the Facebook group and participated in the online conversations. The support I found there from women who GET IT is nothing like I’d ever experienced. After reading all the Cervivor stories and joining the Facebook group, I wanted to find people in real life and went to my first Cervivor MeetUp. The MeetUp was a new beginning for me and is a big part of the path that led me to go to Cervivor School and to become a Cervivor Ambassador.

Becky at Cervivor School 2019

2. How did this video come to be?

Cervivor School helped me to be comfortable fully sharing my story to help other women. It helped me to truly understand and appreciate that the mission to end cervical cancer needs my story, my face and my voice. I knew I wanted documentation of this crazy journey. I wanted to have a video that I would be able to look back on,  especially for my girls. I had already started a Cervivor story video and when I had decided to shave my hair,  I reached out to a close friend of mine and asked her to video that whole process. The video is beyond what I could have ever imagined! The video is perfect. I can’t even tell you how many times I’ve watched it! 

3. Tell us about the decision to shave your head, and the decision to do it surrounded by family and friends. What did that moment mean to you?

I decided to shave my head before I even started chemo again. I knew I was going to lose my hair, but I was told by my medical team that it typically doesn’t happen until after the second chemo session. When my hair started falling out just two weeks after my first chemo session, I knew it was time. Cancer had already taken so much away from me, and I wanted to own my hair and have the power to shave it before cancer also took that away from me.

I have a dear friend who also happens to be my hair stylist, so there wasn’t anyone else I wanted to shave my head. I decided to do it surrounded by my family and friends because I knew it was going to be extremely tough and emotional. But I mainly did it for my two daughters. I wanted them to be part of the process so that it wouldn’t seem so scary to them. Having them be a part of it, and to have them help cut and shave it, was a moment that I will never forget. It was beyond powerful and touching. And it definitely helped my daughters to be part of the process.

Once my head was shaved and I looked in the mirror, for the first time I saw a warrior looking back at me. I no longer saw a weak and lost woman in the mirror. I knew in that moment that I was going to fight with everything I had in me.   

4. The video shows and tells such a powerful story of inner strength and resolve amid a difficult diagnosis, and truly shows what it means to have the “Cervivor Spark.”  How do you keep up the fight and help your “fire get stronger and stronger each day”?

Honestly, it’s my girls that help me fight. I fight for them and it’s their two beautiful faces that keep me going every single day. If there is a day that I just feel defeated, all I have to do is think of my girls and their future and instantly that fire just grows. Before cancer, there wasn’t anything as a mother I wouldn’t do for my girls and that sure as hell isn’t going to stop now. If anything, it makes my role as a mother have more meaning. I look at my girls in a different light now. I will never stop advocating for myself and I will never stop doing my own research because I have two little humans who need their mom and who don’t deserve to go through and see things that cancer has brought into their lives. This isn’t about me. I didn’t give myself that fire. It’s my strong and resilient daughters that deserve all the credit.

Becky and her “strong and resilient” daughters who keep her going, every single day.

Becky was originally diagnosed with cervical cancer in 2018, at age 35, and quickly became an active member of the Cervivor community, joining Facebook Group discussions, attending MeetUps, participating in the September 2019 Cervivor School and becoming a Cervivor Ambassador. She was diagnosed with a recurrence in late-2019, just weeks after returning from Cervivor School. Read her Cervivor story and learn how, amid this most recent diagnosis, her Cervivor Spark and passion to prevent other women from cervical cancer gets stronger each day.

As we know, cancer takes no quarantine.

Cervivor Community, 

The COVID-19 pandemic has brought unprecedented challenges for all of us. Many of us are navigating yet another “new normal”. More than ever we are committed to doing our best to continue supporting patients and their loved ones during this crisis. As an organization we are stronger than ever. We are still a global leader in the cervical cancer space and making our voices heard. This work continues. We have no choice.

But the reality, like so many other nonprofits, we have felt the burden of not being able to have in-person events. 

While the world hunkers down in response to the COVID-19 pandemic, cancer takes no quarantine. Our work connecting women impacted by cervical cancer is as important as ever. Our work building a community of support is as essential as ever, especially for those currently in the midst of treatment who now face a whole new level of challenge…and fear. 

We hope you will use #GivingTuesdayNow to support Cervivor and ensure that we can continue our mission of supporting women affected by cervical cancer now and in the future. 

We understand that money may be tight. If you are unable to donate, please share our fundraising efforts. We need your support. We need our community. You’ll see more and more events that keep us connected while physically distancing. We’ll also continue training patients to become advocates, but to do so we need your support. It is crucial to our survival.

Can we count on you?

We’re stronger together — even virtually. My thoughts are with you all.

Tamika Felder 

19 Year Cervivor 

Chief Visionary, Cervivor, Inc. 

Here I Go Again On My Own: Quarantining (Again!) in 2020

Cervical cancer survivor, graphic designer, frequent journal-er, and now published author Andrea Bonhiver has been experiencing “quarantine flashbacks” amid the current COVID-19 pandemic:

“I spent March 7 to April 22, 2019 basically quarantined in my apartment after surgery for cervical cancer. Here I go again in 2020! Who would’ve thought?”

The feelings of trauma that come with having cervical cancer are VERY similar to what many people are experiencing during this pandemic, Andrea reminds us. “I lived with these feelings of anxiety and uncertainty on a pretty constant basis for 2 years: 

✓  A scary diagnosis. 

✓  Living with something that is potentially life-threatening. 

✓  Not being able to do the things you’d normally do as freely as you’d like. 

✓ Fear and uncertainty about EVERYTHING. 

✓ Questioning everything in my body that feels a little bit ‘off’ and constantly wondering “is that normal?” (As in: My breathing feels tight. Is that a symptom? Is the cancer spreading? Do I have COVID-19?!)”

Amid the physical isolation that many are living through to protect themselves from COVID-19, Andrea doesn’t want anybody – especially not cervical cancer survivors – to feel alone. Certainly not the type of alone that she felt when she received her cervical cancer diagnosis. She’d gone looking for hope and information “in the blue light of the internet” but found mostly “scholarly articles, or scary ones about the invasive and painful treatments I might need, or about survival and recurrence rates. Cold hard facts but very few real-life stories.”

So she wrote her own. Not just as a Cervivor story for our website, but a book: The Cervical Cancer Companion – written to help others “process the trauma of cancer as you experience it.”

Now, Andrea is looking back on her post-hysterectomy, post-surgery isolation to share tips on how to get through the anxiety and isolation many are feeling with the current COVID-19 quarantine.  

Andrea’s quarantine tips for our Cervivor community:

1. Create a “What If” journal. When you feel overwhelmed by the uncertainty and fear, sit down and just let it all out. Bullet out a list of everything you’re afraid of and worried about. Irrational or fully logical. Let it all go. Then go back and try to come up with a statement for each one. “If this happens, then_____________.” You might find that the outcome of each worst fear is not as catastrophic as you have imagined in your mind. And if it is? You *will* make it through.

2. If you need help? ASK FOR IT. I am not at all surprised that as a society we have risen up to support and encourage one another. I saw this first-hand throughout my cancer journey and it was a real window into just how GOOD and SELFLESS people can be. People want to help because they’ve been helped by others, too. Don’t be afraid. Asking for help isn’t a sign of weakness, it takes guts and if that’s not strong, I don’t know what is.

3. Know that you will grow through this. There are always things to be learned. Areas of our hearts and character will deepen and be strengthened through this. Getting stronger and becoming better people is never not painful, but is always a positive thing.

4. Remember that psychological and emotional trauma takes a toll on cognition. EVERYTHING HAS CHANGED. We should not expect our memories to work as well as they did before, nor should we expect ourselves to be able to recall all of the information we had at front of mind before. Go easy on yourself. Lower your expectations for yourself. Do your best.

5. Tend to your emotional health. Check in with yourself. Ask yourself what you need. Write. Pray. Cry. Laugh with friends over Facetime. Grieve if you need to. Rejoice if you want to. Just don’t act like nothing has happened.

6. Manage “The Wait.” I created a few pillars of self-care during “The Wait.” When you have cancer, “The Wait” is the time between your test/treatment/surgery and receiving the results. It’s long, it’s miserable, it’s anxiety-inducing. So we need distractions. For this 2020 Pandemic, the shelter in place orders are our “Wait.” Here are those pillars that I think can get us through:

  • Support: Who can you call/visit with? Make a list.
  • Counseling: There are counselors all over the country doing Facetime sessions, if you are struggling. There are also counseling and meditation apps that are helpful.
  • Movies/TV: Don’t shame yourself for seeking a mental escape. It’s necessary to give your brain a break in times like this. I personally found it comforting to watch shows set in other time periods, or movies I enjoyed from my childhood.
  • Books: Many libraries have an app called Libby where you can check out ebooks and audiobooks if you run out of books in your home.
  • Music: Make a playlist of songs you find uplifting, soothing, or calming. Go to it when you feel overwhelmed.
  • Move Your Body: Many of us can’t do this during or while recovering from treatment, but if you can, go on walks! Do some gentle yoga. Find ways to bring motion to your system and shake off the anxiety. 

7. Grief and Gratefulness: These themes will carry us through this tragic season in our world. Make a list of what you’re grieving and another list of what you’re grateful for. Keep adding to it every day. Eventually, I believe our gratefulness will outweigh our grief. ONE DAY.

How are you surviving quarantine? And if you are in a place that isn’t under “stay at home” orders, how are you managing any COVID-19 related anxiety? Do you have a unique experience with it as a result of your experiences with cervical cancer diagnosis and treatment? If so, please share with Cervivor via the comments below or email info@cervivor.org 

Andrea Bonhiver lives in Minneapolis with her husband and dog. Diagnosed with adenocarcinoma in situ at age 33, Andrea journaled throughout her cervical cancer diagnosis and radical hysterectomy as a way to process her emotions and release her “anger and heartbreak onto a bright white page.”  She decided to share her story and experiences as a book to help others going through cervical cancer know that they are not alone. Her book, The Cervical Cancer Companion, includes personal journal entries through each stage of her experience, prompts to help readers process and record their own journey; practical tools like caregiver calendars, medication trackers and shopping lists; and mantras to keep your mind centered.

Read Andrea’s Cervivor story

A Cervivor Gives Back

When the threat of Coronavirus became very real to the United States and it was clear that PPE (Personal Protective Equipment) for healthcare workers would become nearly impossible to acquire, mine and many others’ first thought was: what can I do to help? It’s no secret to cancer survivors the length our healthcare experts go to to make sure we live. The N95 masks that are meant to be single use are now being used over and over again by workers that are coming in direct contact with COVID-19 patients. This is a very scary time made worse by this fact. One way I learned I could help was by making face masks that could cover the N95 masks, helping to extend their use. It’s by no means ideal, but is the current reality. 

Crafting N95 covers for local medical staff.

I played around with a couple patterns until I found one I liked, and ended up using this one. I still had some elastic left over from scrunchie making with my daughter from the previous summer, and plenty of fabric as well.

I joined a local Facebook community (RVA Masks 4 Health) whose primary mission is to make, donate, and distribute homemade masks to local hospitals and other essential workers in our area. I was gifted 10 more yards of elastic from this community and got to work making about 40 in total, until both my supplies AND sewing machine gave out. Working with my lymphedema therapist turned friend, Laurie Pearman, I was able to get enough donations that we could distribute 100 of them for her hospital system here in Richmond, Virginia. Meanwhile, the Facebook group continues to help each other in the sourcing and donation of materials to local crafters, and for those who can’t sew but wish to help, in delivering the masks to drop off locations. Hundreds of masks are being made daily by these home crafters. There are even members using 3D printers to make masks, face shields and doodads that will hold the elastic off of nurses ears so that it doesn’t break their skin after wearing them for long shifts. 

Completed masks ready for delivery!

It has been comforting to see so many people stand up to help during this crisis. At Cervivor, one of our mantras is #StrongerTogether, and this has been another instance of the truth in that statement. Of course, the best way to help is simply to stay at home if and when possible. I hope all of our Cervivor sisters are staying safe and healthy. You can always reach out to us through our I Am Cervivor Facebook group for our support. 

Mary Baker is a three year survivor of stage 3B cervical cancer. She is an advocate for women’s health, a mom of two, and a proud Cervivor Ambassador and Cervivor School graduate. 

A Message From Our Founder

Cervivor Community, 

We are still in the midst of a global pandemic that has disrupted our daily lives. As we settle into yet another “new normal’, I want to assure you that during this time our community is as resilient as ever. Our leadership is here to support you during this time of physical distancing. Our message to you has been and will continue to be “you are not alone”

Our in-person events are on pause for an unforeseen time, but we are more committed than ever to continue sharing our award-winning content and creating special virtual events to keep us all connected and informed. 

You’ll see more and more events that keep us connected while physically distancing. My dining room has become my virtual hub. It’s where I participate in countless Zoom calls, and also where I’ve been sharing meals with my family. Despite this global crisis, I try to find something to be grateful for in each day. Don’t get me wrong, it can be exceptionally hard, but if I look hard enough I find it. In the midst of all of this, I celebrated 19 years of cancer survivorship. I’m grateful for that. I don’t take it for granted at all. Cancer still exists even during a global crisis. That means my promise of making my survivorship count is still at the forefront of my daily work. Because we must still end cervical cancer.

During this time I want to hear from you. I want to know how you are coping with cancer and COVID-19. Let me know how we can support you. Let us know what type of virtual events you’d like to see from our organization. 

This time of isolation can increase anxiety and sleep deprivation. My tips for you during this time:

  • Physically distance yourself, but socially connect
  • If you need to leave your home, protect yourself and others you may encounter
  • Frequently and diligently wash your hands (using the 20 second rule)
  • Stay informed but limit yourself from overwhelming newsfeeds
  • Be diligent in knowing what is credible and what isn’t 
  • Stay hydrated 
  • Move your body aka stretch 
  • Get some Vitamin D — even if it’s just standing outside your residence
  • Enjoy your quarantine snacks but not too much!
  • Contact your doctor and ask for contingency plans for any upcoming visits/treatments
  • Reach out if your emotions get the best of you. “You are NOT alone!” 

Also, if you or someone you know is struggling to find financial resources during COVID-19 for people with cancer, I encourage you to visit this list complied by Cancer.net.

These are just a few reminders to keep you healthy and safe during this time. Remember you are a Cervivor. We’re stronger together — even virtually.

Tamika Felder

19 Year Cervivor

Chief Visionary, Cervivor, Inc. 

Giving Voice to our Young Adult Cervical Cancer Community

During National Adolescent and Young Adult (AYA) Cancer Awareness Week (April 6-10), we want to shine a spotlight on the many young adults who have played such a key part in shaping and supporting our Cervivor community.

AYA Cancer Awareness Week focuses on 15 – 39 year olds who are affected by cancer. As cervical cancer is most frequently diagnosed in women between the ages of 35 and 44, there are many Cervivors in this “young adult” cohort of women, who face unique challenges facing a cancer diagnosis at a time in their lives. 

Let’s give voice to young adults and the isolation they face:

When treatment experience in and out of the hospital can be particularly isolating for young adults. The average age in a (non-pediatric) hospital is 60, and the average age of a cancer diagnosis (across all cancers) is 66. Young adults fighting cancer, and young women fighting cervical cancer,  can find themselves alone with no one their own age to connect with. Then, many have to self-isolate at home as part of treatment due to a weakened immune system. Generally, the top psychosocial issue for young adults battling cancer is social isolation.

For Tamika Felder, the founder of Cervivor, that profound feeling of isolation ultimately led to action:  “I was 25 when I was diagnosed with cervical cancer. I wasn’t married. I had no kids. I was excited to finally be finished with college and living independently and kickstarting my career. I was focused on setting my long-term life goals, and on everything I wanted to achieve. Then, suddenly out of nowhere, I had cancer. My future looked totally different, especially with the loss of my fertility. It felt like a complete loss of myself,” said Tamika.  “I felt totally isolated and alone. I felt at that time that it was an embarrassing and ‘stigmatized’ cancer to talk about.” Feeling totally alone, Tamika started reaching out and building a network of cervical cancer survivors. From that, Cervivor was born.

“I felt very alone during the first year after treatment because I didn’t know any other young adult cancer survivors or cervical cancer survivors,” said Emily Hoffman, who was diagnosed at age 30, shared in her Cervivor story. She speaks about her loneliness and isolation, and the empowerment and support of finding women her own age who had been through what she went through, in her video “Hey Girl.”

Let’s give voice to catastrophe of losing your fertility as a young adult:

“I mourn the ‘normal life’ that cancer ripped away from me,” wrote Sarah Thibodeaux in her blog on Cervivor, Young Adult Cancer Survivorship. Sarah was only 29 years old when she was diagnosed with stage 3 cervical cancer and lost her fertility as a result of her treatments, “Now I am now at an age where a question that I tend to get from people is whether or not I have any children. When I tell them that I don’t, they usually follow up with the question ‘Well, why not?’  It’s in that moment I always have to decide just how in-depth I want to go about my situation, and it can be an awkward experience for both of us.”

“Nobody deserves to lose their chance to have a biological child.  Fertility is a loss so great that it cannot be put into words,” wrote Megan Tanner in her blog Fertility, Family & Cancer. Megan was diagnosed at age 32. “Sometimes, I feel like my body failed me twice (cancer being the first fail), but I have to remind myself it wasn’t me, it wasn’t my body – it was the treatment that did this to me.  The odds were against me, but it wasn’t anyone’s fault, especially my own.”

SPOTLIGHT: Several members of the Cervivor community have joined with other young adult cancer survivors to serve as vocal, active advocates for state and federal coverage of fertility-saving procedures as part of cancer coverage. “Young adult cancer patients have already had to sacrifice a lot to their disease – their chance at future parenthood needs to be valued and protected. We think one of the best ways to do this is by expanding access to fertility preservation, like sperm and egg freezing, through better insurance coverage,” says Joyce Reinecke, Executive Director of the Alliance for Fertility Preservation

“Over the last few years, we have worked with other nonprofit organizations and patient advocates across the country to call for this coverage, and we are thrilled to report that ten states have passed laws to protect this option for cancer patients. This has brought coverage to over 30M people who previously did not have this coverage!”

Let’s give voice to financial hardships that young adults face:

 “Being a young adult cancer patient was tough,” shared Morgan in her blog Creating Patient-Provider Synergy. “I turned 26 and I was essentially booted off of my mother’s insurance. I was paying a hefty premium, co-insurance, hotel and gas in order to receive the care I never had before. It became unfeasible and at the time I didn’t know where to turn for resources.”

Let’s give voice to those who share their voice:

Let’s give voice to the many Cervivors who were diagnosed when they were young adults, and who have become shoulders of support and advocates and educators for HPV vaccination, HPV screening and Pap testing. 

Like Cervivor Ambassador Karla in Honduras, who let us know on Facebook that she led a cervical cancer prevention and HPV vaccination information session at her work. Like LaTasha, a Cervivor Ambassador in Florida who was diagnosed at age 32. Like Amy, a Cervivor Ambassador who was diagnosed at age 24 and who now is applying her Cervivor School 2019 advocacy training at home in Australia. Like Tessa, who was first diagnosed at age 28 while in medical school, or Katie and Taylor, who were both diagnosed at age 27. Like so many others.  

Resources:

There are a number of organizations addressing the unique needs and challenges of young adult cancer survivors: Stupid Cancer, the Alliance for Fertility Preservation,  and the Ulman Foundation.

 

Deploying Cancer Coping Strategies During the COVID-19 Crisis

Everyone is experiencing the COVID-19 global health crisis in a different way. 

Healthcare professionals are experiencing the tragedy from the front lines. Working parents are experiencing the hardships of balancing a conference call with a screaming toddler. Women are experiencing childbirth without a partner present to support them. Engaged couples are experiencing the heartache of cancelling “the big day.” Children of elderly parents in nursing homes are experiencing the anxiety of getting the dreaded call their parent has become infected. People are experiencing death, and their loved ones are experiencing the inability to properly mourn them. The experiences go on and on, and they will be forever ingrained in our memories.  

What is not unique to anyone’s experience right now is that we are all feeling elevated levels of anxiety, sadness, and anger due to our inability to know what will happen to ourselves or our loved ones. We lack control. We lack autonomy over our own health as it’s in the hands of others. We lack real social connection and the ability to spend time with who we want, doing things we like to do. 

My husband Matt and I on a walk in the woods to distance ourselves from others and enjoy nature.

And this, is what it’s like to battle cancer.  

For some cancer survivors like myself, this unprecedented crisis has conjured up the same emotions we experienced during our treatment. Emotions that took a really long time to heal from. After finally feeling back in control of my own health, it’s gone. I am confronted once again with the notion that at any minute my health could take a drastic turn and I’m back to the all too familiar feeling of intense vulnerability. Of isolation. Of anxiety. Of sadness. And of anger. The foundation is being rocked again. The foundation I worked so damn hard to build back. 

These emotions extend to my experience as a caretaker. Throughout the ordeal of my husband’s kidney transplant in 2018, I dealt with the terrifying notion that he could be taken from me. And because the transplant medications suppress his immune system, Matt is in the “high risk” category for this virus. His chances of survival are less than most if he contracts it. This has caused us to be overly cautious about bringing the virus into our home. We closed up shop pretty immediately, and jumped into our all too familiar bubble at home; sidelined once again from the world due to health concerns. Soon after, (most of) the rest of the country joined. 

Wednesday night virtual hangouts with my best friends.

And yet, as it was when we were both sick and felt the world crashing down upon us, we are humbled by the fact that others are struggling far more than we are. We are safe. We are (currently) healthy. We have food and shelter. We have each other, and by phone call, text, or virtual hangout, we have an amazing support network. We know we can get through anything. And maybe even enjoy ourselves while doing it. 

You see, caretakers and patients are made of steel. We have already weathered these intense storms, and we continue standing. We know how important self-care is. We know how important it is keep our bodies strong ready to face whatever there is to come. This means eating well, meditating, exercising, whatever it takes. We also have the superpower of being truly vulnerable which allows us to deeply connect with others around us and call them to say “I’m not ok, I just need to cry.” And cry I have. 

My hope is that anyone reading this can also deploy these coping strategies. There is strength in self-care and vulnerability. Believe me.  

My virtual yoga class with my favorite yogi.

To my fellow cancer patients and survivors – I know how scary this is. How unfair is it that our already fragile physical and mental health is being put to the test again? Very. But, remember that we are insanely resilient. We can lead by example here. Don’t forget to breathe, and take care of yourselves. We’ve got this

And to all healthcare professionals out there – you continue to be my heroes. Thank you. 

Kate Weissman is an (almost) four year-year Stage 2B cervical cancer survivor and a Cervivor Ambassador serving as an advocate for the cervical cancer community. She also volunteers with the American Cancer Society Cancer Action Network, lobbying for the implementation of cancer-related policies that will help patients and their families, and the Alliance for Proton Therapy Access. She lives in Boston, Massachusetts with her husband Matt and fur baby Giada, and is a proud aunt to five nephews and one niece. She is the Vice President of Integrated Project Management at a Public Relations agency, and an avid food enthusiast.   

Thriving Amid a Crisis

I’m sitting here reflecting and it’s pretty clear to me: I never thought I would be in a world pandemic crisis in my lifetime. That was something we only learned about in history books, right? We’ve become so cutting edge due to advancements in health care technology like testing, vaccinations and medications. I am proving my naivety as we are not bulletproof from everything and we have several issues at stake.

My life is fairly busy and there’s not a lot of dull moments yet I’m sitting here in isolation to protect my immunocompromised body. This COVID-19 virus has proven to be something that has uprooted my life: some positive, some negative. I work as a dental assistant and office manager for two offices. The dental profession has taken a hit due to an aerosol-borne virus.  It has left my coworkers and myself unemployed for the time being.


It’s a strange feeling when you’re used to managing every aspect of every day and you go to completely nothing. I’m here a week into quarantine I catch myself thinking of all the negatives; the uprooting of lives and the health of friends, family, and people I haven’t even met yet and the financial implications this will hold for all of us. The stress on interpersonal relationships, the increase of depression and anxiety, and the general fear of the unknown for our future. I won’t disregard these negatives. It’s the social worker in me. Oh, did I mention I was a part-time master’s student for social work?

My positive thoughts are that I am thankful for a slow down. I now have more time for homework, I get to exercise, spend time with my dog, etc. But even these thoughts have expanded and deepened so much more. Where I have been able to spend more time on homework, I’ve also signed up for auditing a class through Yale (thanks to a friend), I’ve picked up my camera and snapped some photos of the birds visiting the feeder, I dove into my old iPod and listened to music I haven’t heard for a few years, picked up the exercising, cleaned and organized, written creatively and I’ve caught up with old and new friends through chat/Skype/FaceTime.

Most importantly, I have asked myself multiple times, “How can I help?”  Every morning I’ve read constant panic-filled stories on my local Facebook pages and wish I had the means to help everyone. One in particular stood out. The postal service workers needed hand sanitizer.  I knew I had some small travel bottles so I gathered them up, wrote a small note of encouragement and sealed it up in a Ziploc baggy. My dachshund, Sassy, and I walked up and put it in our lock box. The next day we received a nice thank you note attached to our mail. Later on I found a few more travel bottles and did the same thing. Again, we received a nice thank you note.

I’m constantly praying for cardinals to show up and let me know everything is going to be alright. Last weekend I received a beautiful pair of cardinal earrings in the mail from a First Descents bestie, Bethany, and yesterday I received a packet with beautiful cardinal photos and a handwritten note from my friend, Mark. These are the little things I appreciate so much during this time. It makes me miss hugging my friends and family. I’m clinging onto the feeling of the last hug and kiss I received to make the time alone not feel so lonely. 

I also knew I wanted to volunteer some of my time, while I had it, to my favorite organization, Cervivor. We’ve been hit recently with a tremendous loss to our leadership team. I think it’s safe to say that we all need help during this time. Little tasks end up becoming these wonderful projects and I know what I’m doing means a lot to those who need the help. I would highly consider volunteering virtually with your favorite organization as well! I know this too will pass but it is my hope that our society will become reacquainted with humanity and compassion through this all. 

Morgan is a metastatic cervical cancer survivor, Cervivor Ambassador, and the 2018 Cervivor Champion recipient.  She lives in the rural state of Iowa where she continues to advocate tirelessly.  You can find her networking in various communities for cancer prevention in hopes her story can help others.  She was recognized for her advocacy completed in 2019 with the Iowa American Cancer Society Action Network.  Morgan continues to advocate along side Above and Beyond Cancer, Bras for the Cause – Madison County, the Iowa Cancer Consortium, Iowa Department of Public Health, and Des Moines University.

During Women’s History Month, Let’s Celebrate an Unsung Heroine in Cervical Cancer Prevention

March celebrates Women’s History Month! Let’s use this opportunity to recognize an unsung heroine in cervical cancer prevention: Mary Papanicolaou (1890-1982), the wife of Pap smear inventor Dr. George Papanicolaou.

In the mid-1910s, Dr. Papanicolaou was conducting research at Cornell, but because he himself was not a clinician, he lacked access to human patients – except one: his wife. For years, Mary volunteered as an experimental subject for her husband, climbing up on to his examination couch nearly daily so that he could sample her vaginal fluids and cervical cells, which he would smear on a glass slide and examine them under a microscope. It is reported that Mary held gatherings for female friends who agreed to have their cervixes sampled, providing additional subjects for her husband’s research.  

After one of these women was later diagnosed with cervical cancer, Dr. Papanicolaou was able to determine that cancerous and precancerous cells were visible on the samples. In 1928, he presented these findings at a medical conference, kickstarting the research and refinement that ultimately led to the Pap smear test. With Mary’s willingness to have her cervix sampled daily (for years!) she lay the foundation for the invention of the Pap test and ultimately, for the HPV test and HPV vaccine. Thanks to Mary and her husband, cervical cancer can be detected early, cervical cancer mortality rates have plummeted and thousands of lives are saved each year. Mary Papanicolaou, we celebrate you!

What Was Viral Before the Internet? HPV.

Today (March 4) is International HPV Awareness Day. Join fellow advocates and educators worldwide today in a social media campaign to destigmatize HPV and remind people that HPV was “viral before the Internet.”  

What do cat videos,  double rainbowssneezing pandas and dancing sharks have in common with HPV? They are all “viral.” For this International HPV Awareness Day, our friends at the International Papillomavirus Society have developed an engaging suite of shareable graphics and videos that play to people’s love of memes and viral videos, and uses that to focus attention on HPV.

Cervivors, Let’s Layer in Cervical Cancer Prevention Messages!
The International HPV Awareness Day campaign elements are focused on HPV’s link to cancer generally, but not at all on cervical cancer. As a community of Cervivors, let’s take advantage of this opportunity to help these campaign elements “go viral” while layering in our cervical cancer education and calls to action for prevention (vaccination, HPV & Pap testing, annual well-check visits). Let’s enhance the conversations about HPV today on International HPV Awareness Day, and every day until the virus is destigmatized, HPV vaccination is broadly implemented and cervical cancer is eliminated!

Let’s Stop Fake News About The HPV Vaccine!

We in the Cervivor community understand and appreciate that the human papillomavirus (HPV) vaccine is a cancer vaccine. The word’s first cancer vaccine, in fact. We understand that it can save lives. Yet, misconceptions and “fake news” about the HPV vaccine persist. The myths and misconceptions have obscured the importance of the vaccine for cancer prevention – for both men and women

The more parents who take their children to get vaccinated, the broader the adoption across the population, the closer we will get to our goal of ending cervical cancer – as well as other cancers related to HPV, including penile, anal, vaginal, vulvar and throat cancers. 

MYTH 1: HPV vaccination is not safe.

FACT: The HPV vaccine is safe and doesn’t contribute to any serious health issues. The vaccine itself has been researched for many years (including 10+ years of research before it could even be used in humans) and has been approved by the Food and Drug Administration since 2006. Similarly, the Global Advisory Committee on Vaccine Safety of the World Health Organization annually reviews all published and emerging data about the vaccines in real-world use and has, year after year, declared HPV vaccines safe for use.

MYTH 2: The HPV vaccine has side effects. 

FACT: The HPV vaccine has the same potential side effects as any other vaccine: pain or redness at injection site, nausea, and headaches – all of which are temporary. These are minor effects or drawbacks especially when compared to all of the benefits you gain from the vaccine in the long run: protection against HPV-related cancers.  Rarely, an allergic reaction to a vaccine component or ingredient can occur – but that is true of all vaccines and medicines. All people are monitored for 15 minutes after having the vaccine. If an allergic reaction does occur, it can be treated quickly – as immunization providers are trained to deal with such a reaction. Again, this can happen with ANY vaccine and is not specific to the HPV vaccine. 

MYTH 3: Only girls need to get the HPV vaccine; boys don’t need it. 

FACT: HPV vaccines are approved by the U.S. Food and Drug Administration for males and females ages 9 to 45. HPV affects both men and women. In men, HPV can cause penile, anal and oral cancer. In women, HPV is not only the cause of cervical cancer, but is also associated with some vaginal, vulvar, anal and throat cancers. The HPV vaccine can protect against these cancers, as well as protect against genital warts (which are also associated with HPV). So the vaccine truly can help both sexes. Overall, the vaccine will have quicker, greater impact and protect more people if both girls and boys get vaccinated. The ideal time to vaccinate is in the tween and early teen years. Research shows that younger people create more antibodies to the vaccine than those aged in their late teens. (This is why those aged 14 and under usually only need two doses instead of the three doses administered to adults.)

MYTH 4: Since the HPV vaccine is not required in every state, it’s really not important.

FACT: While the HPV vaccine is not mandatory in some states, this could soon be changing. More and more states are now requiring that kids be immunized. Many have programs to fund HPV vaccination, even if it is not a state requirement. Regardless of whether or not a state has laws or regulations about the HPV vaccine put in place, it is still a highly important cancer vaccine for children to receive. HPV causes virtually all cases of cervical cancer, as is also associated with vulvar, vaginal cancers, penile cancers, anal and oral cancers. Vaccinating tweens and teens against HPV is a major step to help protect them from these deadly cancers.

MYTH 5: Getting the HPV vaccine will encourage adolescents to be more sexually promiscuous.

FACT: Research has shown that there is no evidence that boys and girls who receive the vaccine have sex earlier than those who don’t have the vaccine. Nor do they have more sexual partners once they became sexually active. No research links the HPV vaccine to increases in sexual activity. 

MYTH 6: Only sexually active people need protection against HPV. 

FACT: The vaccine is most effective when administered to individuals who have not been exposed to HPV. Thus, giving the vaccine to tweens and teenagers before they become sexually active, offers the best protection. However, the vaccine is recommended in individuals who are sexually active as well. The HPV vaccine is approved by the FDA to be given to males and females as early as age 9 and up to age 45

MYTH 7: You got the HPV vaccine, so you can skip your Pap test.

FACT: Women who have been vaccinated against HPV should still keep up with cervical cancer screenings. As with any vaccine, the HPV vaccine may not fully protect everyone who is vaccinated and does not protect against all HPV types. Nor can the vaccine help clear an HPV infection that is existing in the cervix at time of administration. While the frequency of Pap testing can be extended for women who have been vaccinated because of the protection afforded by the vaccine, annual health visits should be continued together with the many other important health checks that occur at those visits. 

Resources to Share

The American Cancer Society has several downloadable, printable graphics and handouts focused specifically on HPV vaccination.


Tale of Two Ostomies

As cervical cancer survivors, our bodies undergo very traumatic changes. Chemotherapies. Radiation therapies. Hysterectomies. Biopsies. We also live with lasting side effects that continue to wreak havoc on our bodies and emotional well-being. 

Ten months after my cervical cancer diagnosis and radical hysterectomy, I faced an unfamiliar surgery — a pelvic exenteration. At this point, I didn’t feel like I had a choice. My cancer had metastasized and this was my only option. The choice was made for me.

A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).

What is an ostomy?

Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – and yes, it farts).

Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end, in my case, to the second stoma.

I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.

Getting used to foreign objects attached to your body where waste pours out of is challenging to say the least. It was downright overwhelming at first. I cried every time I had to change my appliances and bags, which was every other day in the beginning. I felt helpless and angry. But as I physically healed things started getting easier and my frustration level decreased. I learned the best time for changing my bags, I learned what foods did and didn’t work with my ostomies and I learned there’s a whole online community for ostomy support and care. 

I also decided that since I was still here I wasn’t going to let my ostomies or my cancer dictate how I was going to live my life. I slowly went back to doing the things I always loved: hiking, swimming, traveling and Jazzercising. Taking back parts of my life was empowering and I felt strong again. Being able to still be me, to do the things that made me feel “normal”, helped me accept my changed body.

Most days my ostomies are unremarkable, just another body part. But I am keenly aware that my cervical cancer took away parts that gave me my womanhood and that I now redefine what it means to be a woman, a true Cervivor and someone who lives for more sunny days.

There are other women in our Cervivor community who are living and thriving with ostomies. If you are facing an ostomy surgery please know that you are not alone and that you have resources. We are here for you. 

Carol is our Lead Cervivor Ambassador and manages our Cervivor Meet Up program. She lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace. Carol & Cervivor have put together a helpful guide for those undergoing ostomy surgery. Click here to view.

2019 Cervivor Champion Maria Franklin infuses her work with passion & fun

Cervical cancer survivor Maria Franklin, recipient of the 2019 Cervivor Champion Award, is BUSY – during Cervical Cancer Awareness Month, and all year long!

She embodies everything Cervivor and the “Cervivor Spark” stands for. Informed. Empowered. Alive.

She mentors other cervical cancer survivors. She hosts MeetUps. She fundraises – via social media, in her community, wherever and whenever she can. She runs the Cervivor Español Facebook group. She helped organize and co-facilitate a Spanish-language Cervivor School in Puerto Rico. She leads initiatives to help ensure that cervical cancer screening, vaccination and prevention messages reach the Latina community in the U.S., and in Central and South America.

Maria, and fellow Latina Cervivor Karla

She even used her birthday as an opportunity for education and fundraising by creating a campaign and rallying her friends to “Help celebrate my 48th birthday by joining me in walking, running or cycling a total of 48 miles during the month of October!#48MilesToEndCervicalCancer

She embodies support and advocacy. She brings her passion to everything she does. She is making her survivorship count, day in and day out. Mobilizing. Advocating. Educating.

Initially diagnosed with cervical cancer in 1999, Maria is a 20+ year survivor who started advocating for cervical cancer prevention and helping to forge a cervical cancer community of women “before there was social media” and before there was Cervivor. She has never slowed down.

Maria has a particularly busy January planned to support and harness Cervical Cancer Awareness Month in her home state of Wisconsin. She’s planned:

  • A “proclamation” from the Governor’s office to officially recognize the importance of January as Cervical Cancer Awareness Month in Wisconsin.
  • Interviews with Telemundo Wisconsin and radio stations in Puerto Rico to talk about cervical cancer awareness and prevention
  • “Teal & White Days” at work
  • A patient reception for Cervical Cancer Awareness Month, in partnership with a local  gynecologic oncology clinic
  • A Cervivor MeetUp to connect in-person with women in her community who are battling cervical cancer or dealing with the after-effects

“Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through,” says Maria.

What is your part? What are you doing over CCAM in your local community?

Let us know in the comments below. We’d love to feature you and your work on our blog, if you are interested!

Watch Maria’s powerful Cervivor Champion Award acceptance speech at the 2019 Cervivor School awards ceremony, or read her remarks below.

Maria’s Award Acceptance Speech:

I truly believe in Cervivor. I truly believe in what we do here. I know we can end cervical cancer. This is why we are here. Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through.

The story is different for every single one of us. It wasn’t easy for any of us. No one else should have to go through what we went through. So we are here today to take this responsibility seriously. Because ending cervical cancer is our job. We have to do it because we have to honor what we went through, and also because of the people we have lost.

Today when you leave here [Cervivor School], you start your work and you start your mission. And if and when you’re feeling you may be a little burnt out, you reach out to one of us and we will help you. We will support you. Because we need to do this for the next generation!

Thanks, Maria, for all that you do for Cervivor, for women today and for the next generation who  – with your help – may live in a world free from cervical cancer.

Maria Franklin is a 20-year cervical cancer survivor who heads Cervivor’s Latina advocacy efforts.

Read her original Cervivor story and her blog post reflecting on 21 years post-cancer.

Watch her story and advice on Cervivor TV.

“Make Cancer Pay” Video Shows the Fiery Passion to Fight Back

The badass, fired-up Cervivor in our video, “Raising Hell To Make Cancer Pay,” is Mary Baker, who is “pissed off” at what cancer has done to her body, her family, and her friends.

Cervivor Ambassador Mary Baker

“I’m pissed off that four of the women that I saw last year [at Cervivor School] are now dead” from cervical cancer.

Mary’s solution to being pissed off? “RAISE HELL.”

Watch her video here.  

We had a chance to chat with Mary about her experiences, and what it means to “raise hell” as a Cervivor Ambassador in her hometown of Richmond, Va. and advocate for cervical cancer prevention.

Q: From the video, you really are fired up by a “Cervivor Spark” to share your story and drive change. Can you tell us what led to this fiery passion and fighting spirit we see in the video?

I had started experiencing odd symptoms that I knew weren’t normal. I kept listening to my body and going to doctors, but it took me going to four doctors over two years until one finally took me seriously and did more advanced evaluations. By that time, I had stage 3B cancer. One of my healthcare providers had told me again and again that it was “just hormones.” Another made some sort of offhanded comment that I should just focus on having babies – although I already had two children and I wasn’t there to ask about fertility! I kept getting misdiagnosed because, even though I knew there was something “off” with my body, I wasn’t being heard and my concerns were not being addressed. 

Women need to listen to their bodies, but that is not enough if the medical community does not take us seriously and listen to our concerns. The worst part is, from my connection to other Cervivors, I now know that I am not the only one to have had months or years of misdiagnosis. This is an experience that has frustratingly been shared by many of us! I’m pissed off about that!

Q: Being “pissed off” is an emotion that many of us share. How do you deal with feeling “pissed off” about these issues?

In all honestly, it is only now –  a few years after my June 2016 diagnosis – that I am delving into the anger and frustration and using it as a force for fighting back, as a force for advocacy and change.

When I was going through treatment and recovery and settling into my new post-cancer life, I had to protect my peace and choose gratitude over anger. At the time, that was better for me and for my recovery. That was better for me and my family.

For a long time after I went through my treatment, I was in a bit of a fog. I was trying to to re-figure out who I was at that point, post-cancer. I couldn’t think about my anger at that point. The anger didn’t serve me for where I was.

Making Cancer Pay tees available at Cervivor.org/shop

Now 3+ years after cancer, I’ve decided that I can choose both. I can feel gratitude for being on the other side of the disease and being here today, yet still feel angry. What happened to me wasn’t okay and it shouldn’t happen to anyone else. I’m mad that misdiagnosis and having symptoms ignored has happened to so many other women. Worse is that I keep losing friend after friend to cervical cancer. THIS PISSES ME OFF.  Now it serves me best to do something about it!

Q: How do you plan to “raise hell”?

Mary and Dr. Sarah Temkin lobbing on Capital Hill

Thanks to Cervivor and the training I’ve benefitted from at Cervivor School, I have a lot of options on how to raise hell. First and foremost, I’ll raise hell by telling my story to anyone and everyone.  I’ve shared my story with members of the U.S. Congress in Washington, D.C. as part of Capital Hill lobbying days.

I sit on the Virginia Immunization Taskforce. I am a district lead in Virginia for the American Cancer Society’s Cancer Action Network. I recently wrote an article about my experiences for HealthyWomen.org so that I could reach many more thousands, maybe even millions, of women.

I’m unstoppable now in telling my story, as I know my voice matters. That all of our voices matter. We cannot be silent. Our voice must be heard. That is how change is made!

The American Cancer Society Cancer Action Network (Richmond, VA)

Q: How do you want other individuals and Cervivor as a group to “raise hell”?

To all women I say, listen to your body. Speak up and speak out. If a doctor’s diagnosis doesn’t feel right, keep asking and keep pressing. I wish I had done that when I was told my symptoms were “just hormones.”  If your doctor doesn’t take your concerns seriously, find one who will.

For fellow Cervivors, tell your story. Share it as many times as possible. Don’t keep it to yourself. You may think your voice doesn’t matter, but it does! Realize that you matter, that your story matters. Speak your truth.

Cervivor School 2018
Cape Cod, MA

If you want more training on advocacy, take advantage of Cervivor School. Plug into the learning and mentorship of other Cervivors. We are here to support each other in dealing with cervical cancer, and we are also here to support each other in our advocacy…and in our anger. If you want to join me in raising hell, reach out to me and plug into Cervivor!

About Mary

Mary is a 3+ year cervical cancer survivor, Cervivor School graduate and Cervivor Ambassador. Read her Cervivor story and her HealthWomen.org article “I Was Told My Irregular Vaginal Bleeding Was Normal, But I Actually Had Cervical Cancer.”

“Hey Girl” Video Highlights the Importance of Support

Cervical Cancer Awareness Month (CCAM) is very much about advocacy, education and outreach. It’s about making our voices heard and about not allowing cervical cancer – and the toll that it takes – to be invisible or stigmatized. This is very much is the mission of Cervivor. Yet, there is also a quieter yet equally as important mission: to be here for each other, to be a support, a shoulder to cry on, an experience-sharer, and a place to go for connection with someone who has been in the same place, fighting the same disease. 

Emily and Cervivor Founder, Tamika Felder

Cervivor’s video “Hey Girl” highlights the lifeline that the Cervivor community has been for so many. 

“To the girl who’s just been diagnosed with cervical cancer, I want to say, ‘Hey girl – I’ve been there too.’ I understand what you’re going through. Your mind is spinning, you’re confused. I just want you to know that you are not alone,” says pink-haired Iowa-based Cervivor Ambassador Emily Hoffman to the camera, kicking off the video.

Emily shares some of her experiences with Cervivor support and connection below:

Q: How did you plug into the support network of Cervivor? What does it mean to you?

It’s funny that I’m in a video that will be shared across social media, as I am not active on social media at all. I don’t use Facebook or Instagram or Twitter. I also wasn’t active on it back when I was diagnosed with cervical cancer in 2013 at age 30. I’d gone through diagnosis and treatment alone, without a supportive community to connect with, share with or learn from. I didn’t know that I needed it. I didn’t realize how alone the disease had made me, and how alone I had made myself. 

I first found the Cervivor website in early 2014 a few months after my treatment ended, and I spent the next 24 hours on it! At the time, I was experiencing so many side effects from my radiation. On Cervivor.org, I finally found ‘my ladies, my community.'” I read every story, every page of the site. I clicked on the link to CervivorTV on YouTube and I watched every episode. I literally stayed up all night.  That was the first time I’d found other young adults with cervical cancer. The website became my lifeline! The website became my connection to other young women who had been where I’d been and had gone through – and were going through – the same thing I was. I no longer felt alone.

Through Cervivor events and events like CancerCon, I met others in the Cervivor community. The people whose stories I’d benefited from online became real to me. They put me in touch with other cervical cancer survivors. Suddenly, I had women just like me to talk to, to call, email, and text. 

Cervivor School 2019, Chicago

Today, six years later, I am a Cervivor School graduate and a Cervivor Ambassador. I’m still not on social media, but I’m connected in so many other ways. If I have a worry or frustration or scare – I have people – via email, text, phone and in person – to reach out to who ‘get it.’

Q: How did you come to be the face of the “Hey Girl” video?

One of the activities I participated in at the 2019 Cervivor School was to write a letter to a woman who was newly diagnosed with cervical cancer. I guess my letter moved people, because the next thing I knew, I was asked to record and film it! 

Because we were writing to an anonymous woman, I struggled with how to start the letter…so I sort of naturally landed on “Hey girl” as a greeting, because it felt informal, friendly and inviting. Little did I know that “Hey girl” is actually a popular internet meme – which people told me later – that features Hollywood heartthrob Ryan Gosling saying all sorts of romantic stuff. Maybe that’s why my letter got such a good response, without me even trying.

While people have shown me the Ryan Gosling memes (they really are quite funny!), my own “Hey girl” message is no joke. It’s true, personal and heartfelt. Women need to know that they are not alone. Women undergoing diagnosis and treatment – and the after effects of treatment – need to know that there is a whole community of women – a whole organization of Cervivors – here to support them.

Q: Six years after your cancer diagnosis, how do you plug into the Cervivor network of support today?

I take great comfort in knowing my Cervivor community is here for me. I have the phone numbers of many of the women I’ve connected with, that I carry with me wherever I go, for whenever I may need them. For example, when I come out of an oncology follow-up appointment, I know who to text. In fact, recently my doctor said something not bad, but not particularly comforting – something I wasn’t exactly sure how to interpret despite my questions. It sent me spiraling. So I sent a text out and I got responses back in two minutes. That’s all I needed. They heard me, they got it. They put me at ease in a way no one else could at that moment. In this community, we can always be unfiltered and  never need to worry about judgement.

Now, being active in the Cervivor community gives me a sense of purpose as a cancer survivor. It enables me to use my experience to make a difference to other survivors. This video will make a difference!

About Emily

Emily is a 6+ year cervical cancer survivor and Cervivor Ambassador who is also involved with the Iowa Cancer Consortium and Iowa Department of Public Health on cervical cancer prevention initiatives. Read her Cervivor story.

Our Resolutions To Ourselves As Cancer Survivors

Throughout Cervical Cancer Awareness Month, we focus on outreach and educating others. But in this time of new year’s resolutions and new beginnings, let’s not forget about ourselves. A few resolutions for life beyond cancer include: 

  • No longer sweat the small stuff. We know just how short life can be. Therefore, let’s not waste time on things (or people!) that really don’t matter, or build us up.
  • Cherish the people who really matter to you.  Our time is precious. Choose to spend it with people who matter.
  • Love the skin you’re in. We may all yearn for our lives before cancer. But the truth, following our experiences, we are no longer that person. Embrace the new you. It just might surprise you!
  • Try to leave fear behind: Those of us who are still here are blessed to be alive, no matter the physical or emotional limitations. We may be plagued by fear of re-occurrence, occasionally or continually. But it’s important to keep that in check and  live… like never before.
  • Enjoy life. Give yourself permission to enjoy, relax, and to rest and reset. 
  • Be adventurous. Do things that scare the crap out of you. Why? Because they remind you that you’re still here.
  • Spend time outdoors for physical and mental health. Whether you want to exercise, find a quiet space to sit, or even just picnic outside with friends, the outdoors is a great space to be in the moment, find beauty in the world and forget about responsibilities that may induce stress.
Survivors keeping one another motivated and challenged! They understand!
  • Make “healthy” fun: Find ways to make your health goals also fun goals. For example, schedule walks with friends instead of lunches or dinners. At Cervivor, we offer the “Survivor Slimdown” – a Facebook community focused on health and weight loss that is both supportive, motivating and fun.
  • Plug in to your community: Don’t be afraid to lean on friends, family and ask for the specific help you may need. The clearer we can be articulating the type of support we may need, the better our support will be. And of course, plug into Cervivor wherever and whenever you need us. We are here for you!

May we all have a happy, productive, fulfilling and healthy 2020!

For more tips on living your best life during and beyond cancer, check out Cervivor Founder, Tamika Felder‘s book, Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” 

#RememberingErica: Why I Keep Fighting and Never Give Up

She’s gone. 

I knew those two words were coming. I’d known for weeks. But when the text message arrived from Erica’s husband, JR, I wasn’t prepared at all. 

All the special bonding moments we’d shared came flooding through me, as well as grief for all the moments we now wouldn’t get to share. As much as Erica had prepared us for “this” — we weren’t really prepared at all. 

I first met Erica in September 2015 when she attended her first Cervivor School. She wasn’t on the other side of her cancer; she was in the middle of it. Fighting it. In the days leading up to Cervivor School, she hadn’t been feeling well and probably shouldn’t have flown from Indianapolis to San Diego. But she powered through. She showed up every single day of Cervivor School. 

By 2016, she’d attended four Cervivor Schools – to not only keep honing her own advocacy and story-sharing skills, but to serve as a mentor to other Cervivors. She became our Lead Cervivor Ambassador. She became one of the faces of our organization. She became one of our most dedicated patient advocates. And, she became a friend who made a powerful mark on me in the brief time I knew her. She showed me what energy and passion was, even in the face of the worst kind of adversity that cancer can throw you.

Today, December 27th, marks the one year anniversary since the death of Erica Frazier Strum.

Death. 

Erica fought cervical cancer not once, not twice, but three times until it finally took her from us. Yet, even when the diagnosis was clear that the cancer was terminal, she educated and advocated. From her hospital bed and then from her hospice bed, Erica was still telling her story when she could barely move, barely talk.

She understood what it meant to be a Cervivor ambassador – to share, to post, to blog, to record, and to make sure that realities and ravages of cervical cancer could not be ignored. She shared on social media from her hospital bed. She came to our Cervivor Schools between hospitalizations to teach us the importance of never giving up the fight. She shared her story in as many places as possible, lobbying in her home state of Indiana and in Washington, D.C. and advocating for screening, prevention, and more treatment options for metastatic cervical cancer. Amid these activities, she authored a moving children’s book, “Living Life with Mommy’s Cancer,” with her son Wylee to help other families confronting cancer. 

She made her survivorship count. 

Erica received the Indiana Cancer Consortium Survivorship Award and the Indiana Immunization Coalition HPV Champion Award. She was also an advocacy volunteer with the American Cancer Society Cancer Action Network. This was a woman who lived her life fully, even while dying. Even while she knew she was going to die. 

Erica wasn’t just a fellow Cervivor. She was my friend. 

Erica let me glimpse into her life in the most personal of ways. She let me film her as she was getting treatment, and then as she was dying, for a documentary about cervical cancer that I am making. She let me film her in some of her worst, scariest moments. She knew how important it was to share and show and tell.

Cervical cancer is not an easy cancer. 

I’m still in the process of making the documentary, and every time I watch and edit footage of my time with Erica, I’m moved to tears. I’m struck with pain. I’m flush with anger. We keep working to prevent cervical cancer, but my friends keep dying! Even as I’m filming my call-to-action documentary, I sometimes drift to a dark place of wondering, should I just give up?

Erica is one of the reasons why I can’t and won’t abandon this work. Even when I’m tired. Even when I have my own health issues, or another cancer scare (it wasn’t). Even when yet another  Cervivor friend dies from cervical cancer. Even when I crawl into bed sobbing, pull the covers over my head, and wonder, what is the point?

Erica is the point. And the 4,000+ other women in America who die each year from cervical cancer. And the 270,000+ women around the world who die each year from this disease. THEY ARE THE POINT. 

Women are still dying of cervical cancer despite all the advancements that have been made. Through our work, we can prevent cancer in future generations. Even from her hospital bed and hospice bed and literal death bed, Erica tackled that work. She recognized the importance of looking ahead, fighting the fight so that we can stop cervical cancer in its tracks.  

Erica Inspires Our Call to Action

I know if Erica were here today, she’d be working with me to finalize our plans for Cervical Cancer Awareness Month (CCAM) in January. I just know she’d ask. “Are we doing enough?” 

In her book, Erica gave a personal acknowledgement to me for empowering her to share her story. But it is she that I owe a debt of gratitude to, for inspiring me to keep up the fight.

She is my call-to-action. She, and everyone who has lost their lives to this disease, is our catalyst for ongoing advocacy. Her commitment to the mission to end cervical cancer was the inspiration behind my creation of the Cervivor Legacy Award, in her honor.

She lives on in my work. 

She lives on in our work. 

With Cervivor, she lives on. 

Let’s honor her – and all women who have lost their lives to cervical cancer – by stepping up our education and outreach this January for CCAM. Let’s turn this day, December 27th – the anniversary of her death, into a day of action, preparation and commitment to our shared mission. Erica wouldn’t want it any other way. 

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

The ER diagnosed my pain as sciatica instead of advanced cervical cancer

My cervical cancer story started in my 40s. I’d been a single mother to three amazing children. They’d all grown up and I had started taking better care of myself and my health. For many years, I admit, I didn’t do my annual check-ups and Pap smear. I didn’t have insurance, but I also did not make time. I didn’t understand the importance of annual exams. I didn’t know what I was up against.

Tracy at Cervivor School 2019 in Chicago

When I turned 45, I started noticing that my periods were different. I was having pain during intercourse. My lower back and the backs of my legs hurt constantly. I still didn’t have health insurance, so I didn’t go to the doctor. I thought my back hurt because I was trying to get healthier and doing more exercise. I lived with the pain for a while until I finally decided to go to the ER when the pain became worse.  

At the hospital, I was told my pain was a “sciatic nerve” to be treated with ice and heat. They didn’t do a pelvic exam or ask about my reproductive health history or anything about that part of my body. They just assumed they knew what was wrong, and they sent me home.

(I guess they didn’t know what I know now:  that low back pain and pelvic pain can be linked to problems with reproductive organs such as the cervix. That a sign of cervical cancer is pelvic pain – especially continuous pain, like the type I had.)

The pain went on for months. Then a day before my 46th birthday,  I was going to the bathroom and something came out that was not normal – it was what looked to be a piece of flesh, from inside me. I knew right then something was wrong.  The day after my 46th birthday, I went back to the ER. This time, they took me in for a CAT scan. After the scan, the ER doctor came in the room and handed me a card. He told me they saw a mass and that I needed to contact the doctor on the card ASAP. 

I left the hospital crying, confused and scared. I was able to get an appointment for the following day. That doctor found an 8 cm tumor on my cervix. She told me right then, “I am sorry to tell you but you have cervical cancer.”

I did not know what to say or think. I burst out into tears. I knew my life had changed forever. I didn’t know what HPV or cervical cancer was. I was scared I was going to die.

My next six months were all treatment, a lot of it: 28 rounds of radiation, 6 rounds of chemo and 4 rounds of internal radiation also known as brachytherapy – a procedure that involves placing radioactive material inside your body.

The good news: in August 2017, I was told I was cancer free! 

Today I want to teach everyone about HPV, cervical cancer and the other cancers that HPV can cause. I want to encourage all parents of boys and girls to make sure their kids get the HPV vaccine. I want to educate women of all ages to keep up with their annual gyn exams.

I also want to make sure that women and doctors know about the connection between lower back pain and pelvic pain to cervical cancer. While of course back pain and pelvic pain can be caused by many different reasons, it is important to at least be aware of the connection and ask questions. I wish the doctors in the ER had asked me before diagnosing me with sciatic nerve pain. I wish I knew to ask questions myself and to mention my irregular bleeding and pain during sex, even though I was at the ER for “back pain.” Cervical cancer is not something I want anyone else to go through. I am going to work hard for the rest of my life to spread the word and end the stigma.

Tracy Jimenez  is a 2-year cervical cancer survivor from Colorado who recently attended the 2019 Cervivor School, where she learned “that cancer will not stop me and that I will be a voice to educate others. I am a fighter and Cervivor School showed me no one is alone in this fight.”

Read Tracy’s full Cervivor story

Thanksgiving with a Side of Gratitude (or Not)

Thanksgiving is a big meal, and the main course of the holiday is gratitude.

Cervivor is a place to get real. So let’s put this on our holiday table: is gratitude easy or tough for you? As cancer survivors, can we confess that we sometimes have a tricky on-again off-again relationship with gratitude? If you’ve just received a diagnosis, gratitude is the last thing on your mind. It wasn’t on my mind in the chemotherapy chair.

As a survivor, I am epically, hugely, ginormously (seriously!) grateful for every day that I have. But that is mixed, still – 18 years later – with the feelings about my lost fertility and, on a bad day, frustration about my ongoing health battles with the after-effects of cancer.

The reassuring part is, I know I’m not alone. I just need to turn to Cervivor Stories and the Cervivor blog to know that others are riding with me on the emotional rollercoaster of the holiday season. I’m feeling grateful to the Cervivors who wrote so honestly about their own gratitude struggles. Thank you for keeping it real. And honest.

 “I wasn’t in a spirit for any holiday after receiving my diagnosis. Everything had gone dark. That year there was no giving thanks on Thanksgiving, no tree for Christmas. What was the sense of doing all that if I felt uncertain about my life? It took a while for me to feel ready to fight back. It was a difficult journey, but I got a second shot at life. Now, I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. There’s so much I want to do, and I don’t take anything for granted. I see life differently now. Problems that seemed huge are not so big anymore. I really don’t sweat the small stuff.”  – Patti

It’s perfectly normal after cancer to have feelings of depression and anxiety. However, once we acknowledge them, we get to CHOOSE what to do with them… Since cancer, I choose to live in a different state of mind. Cancer brings you face to face with mortality, death, and time. Once I began to digest my mortality, it changed my mindset toward every single thing.

I no longer look at the holiday season with the same weight and importance as when I was a child. I still love them, and Christmas is STILL my favorite. But I live with much more intention and purpose now. Every day is Christmas because for me it’s a state of mind that I choose.  New Years’ Eve brings hope and excitement, but I am just as excited about the next 365 days of opportunity and growth.  This shift isn’t something that just happens. For me, it takes a bit of work.” – Holly

It’s hard to feel grateful when you are nauseous, exhausted, depleted, and in pain.  That’s ok!  I would go into a cycle of feeling depressed, and then get mad at myself for not being more thankful that I would make it out of this alive. My boyfriend would constantly tell me, “You’re ‘should-ing’ on yourself again.” 

Going through cancer is hard enough, and the side effects both during and after treatment are draining (to put it mildly).  We should at least be able to give ourselves a break… People write inspirational and positive blogs to give others strength and hope, and to advocate for change, and all of that is useful and wonderful.  But sometimes it is nice to hear that people are struggling with the same crappy emotions that you are. We all have those moments of sheer frustration and anger and complete debilitating sadness over the hand we have been dealt, and that is ok too.” – Ana

This past year has been a process.  A process of grief, depression, anxiety, anger and many tears, as well as gratitude, blessings and opportunity.” – Megan

I had so much unresolved grief and unanswered questions. Cervivor help me settle some things within myself and fulfill the need I have for service to honor my mom. I am so thankful that Cervivor has once made me believe that I can go on. I can go on and help fight cervical cancer.” – Lillian

Do these reflections resonate with you?

What are you grateful for, and what are your gratitude struggles?

Please share in the comments below. We are here to listen and we are here to support you.

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

Voices from Caregivers on Family Caregivers Month

As November comes to a close and families come together over the holidays, let’s remember the importance of the caregivers in our lives. November is National Family Caregivers Month and a great opportunity to give out appreciations to the family and friends who helped support us during our diagnosis, treatment, recovery, and today.

We are pleased that there are many caregivers who are active in our Cervivor community. Several have shared their experience on our blog.

Like Lillian, who wrote about how “taking care of my mother has made me grateful and showed me how to go on.

My great aunt took care of my mother. But when my aunt fell asleep, my mother would call for me to help her. I was young, and it was incredibly painful to take care of my mother and see her suffer. I developed a lot of inner strength during that time. I relied on the love I had for my mother to carry me through those nights. I remember one evening when she was in pain, we held hands and listened to the song ‘I Feel Like Going On.’ We listened to that song so many times that eventually we were both singing it. We both felt encouraged. I felt like I had the strength to take care of her, and she felt like she had the strength to live for her family.

Lillian lost her mother to cervical cancer. In her blog, she reflects about the impact that caring for her mother had on her life. “Many times in my life there have been things that are rough. Many times I want to give up. Sometimes I am having a bad day. But I think about that day, when I held my mother’s hand and sang, and I feel like going on.”

Like Tarrence, who so honestly and openly shared the challenges of getting from one day to the next in his blog post, What did I do as a caregiver?  I endured. 

I just kept going and tried to do things that could keep us all moving forward getting through one day at a time.  Ultimately my role as caregiver was to show up every day and do the very best I could.  That’s really all anyone can ask of you, and it’s literally all you can do…Through this experience, I learned a lot about what it means to really be with someone.   I learned that I can show up for someone in ways I’m not sure I knew I could before this.  I learned that I’m stronger than I thought I was and that my Heather is truly the strongest person I know.  I learned a lot about letting people in and being vulnerable.  For me, being a caregiver meant calling upon all I had to get through one day and onto the next.  It meant bringing the best parts of myself to the tasks we were presented with each day.” 

Like Claude, who learned about truly “being a man” when he became a caregiver to his partner Holly.

In my opinion, being a man is standing with the woman you love and help her walk down a linoleum hallway in the middle of the night and holding her hand as she struggles to stay upright.  It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for Holly to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment.”

Caregivers are a core part of our lives and our Cervivor community. Please leave a comment below if you have an awesome caregiver you want to give a shout-out to. If you have a caregiver who is willing to write about his/her experiences and perspective, we’d love feature them in an upcoming blog! We are stronger when we share our stories, and the whole community can benefit. Email us at info@cervivor.org

Is someone in your community currently helping support and care for a loved one undergoing cancer treatment? Make sure they have resources that can help, such as plugging in with the Caregiver Action Network.

48 Birthdays, 21 Post Cancer

Every year, as my birthday approaches, I go into reflection mode and start thinking about life. Life as it was. Life as it is. Life that almost wasn’t.

My life was forever altered by a diagnosis of cervical cancer at the age of 27. The days following the diagnosis were rough. Within a month of my diagnosis I landed in the hospital with shortness of breath and blood counts so low I needed my first blood transfusion. I spent exactly 30 days in the hospital, not sure if I was coming out alive. If you were around me at that time, you know how terrifying this period was, you know that my coming out of that hospital alive was nothing but a miracle (those were my pneumologist’s actual words). So here I am, celebrating #48 (or the 21st birthday I get to celebrate post diagnosis). 

Survival… Life after cancer… This is something that doesn’t happen to many of the women diagnosed with cervical cancer. Within the last year my Cervivor community lost 4 beautiful women in the prime of their lives as a consequence of cervical cancer. In the USA, where approximately 13,000 women are diagnosed with cancer in the last year, 4,200 women will die due to this cancer. Some people may look at these numbers and think they are small (I’ve been told that before); well let me tell you this: These numbers matter. These numbers matter to the women diagnosed with cancer, hoping they are on the right side of this statistics. These numbers matter to the families of the women who die each year, to the young children that will grow up without their mom… These numbers matter to those of us who survive this disease, because we know how close we cut it, how nerve wracking every follow up is, because the cancer may be gone, but the damage it did to our bodies is permanent (think of infertility, ostomies, lymphedema, neuropathy, bladder problems, just to mention a few). Most importantly, these numbers matter because we can change them. We can change the statistics because we have the means to prevent cervical cancer: The HPV vaccination is the #1 way to prevent cervical cancer. Plain and simple. A vaccine can prevent cervical cancer. I don’t think it can be any easier than that. 

We can literally protect our next generations from cancer-causing HPV strains by simply vaccinating our children (as early as 9yrs. old). It is an important vaccine because it would protect them from the high risk strains that are linked to cervical cancer (and cancer of the vulva, vagina, anus, penis, oropharyngeal (back of the throat). Cervical cancer will be like polio; gone, a thing of the past. I would love to see cervical cancer disappear and I believe that is possible with this vaccine. 

So each year, around this time, that sense of duty to those who did not make it demands that I tell you to vaccinate your children. That 27 yr. old Maria, terrified at hearing the news that would change her life forever demands that I tell you to vaccinate your children. It is imperative that you do because this is the one cancer we can basically eradicate. Every now and then I see these prayer chains pop up in social media asking you to share a prayer to find a cure for cancer; well, we now have a vaccination that can prevent a cancer and that is an answered prayer.

Celebrate my 48th birthday with me by scheduling your well-woman exam and vaccinating your children against HPV. Maria Franklin is a 20-year cervical cancer survivor who is also a part of Cervivor Leadership, and heads our Latina advocacy efforts. She was awarded our 2019 Cervivor Champion Award. Watch her story here.

A Call for Action & Education During National Hispanic Heritage Month

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.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

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.

Educational activities? That sounds right up our alley as Cervivors!

Festivals? Preventing cervical cancer and saving lives feels like something to celebrate to me!

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.
“I was diagnosed with Cervical Cancer stage IIB in 2008. I had not visited my GYN or had a Pap test for over 3 years. My mission now is to share my story to every woman especially Latinas, who are the most affected by this disease, and convey the message that my journey does not have to be theirs”. 
Patti Murillo-Casa

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.)


Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors

  • 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 (amen to that!); policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage (hallelujah!), initiatives to expand HVP vaccination (yes!). 
  • 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. 

Cervical cancer is preventable. Cervical cancer is colorblind. So are we at Cervivor. 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.