Transitioning from Patient to Advocate

You have cancer.

Those 3 words would impact my life in ways I never imagined.

I heard those words in January 2016, which coincidentally is Cervical Cancer Awareness Month. At the time, I was too busy worrying about fighting cancer that I didn’t pause to think why I had never heard of this cancer before.

March 2016 I was declared NED (No Evidence of Disease) and life was supposed to go on, back to normal. What I didn’t realize is that I couldn’t just go back to my life.  Cancer had happened and I was not able to move past it. One night I came across a blog about a group called, “Cervivor” and I was intrigued by the name. I started following them on Facebook where I saw a post about an upcoming Cervivor School and they were awarding limited travel scholarships; I submitted my application for a travel scholarship and I waited. I remember thinking that my story was not special enough or I wasn’t sick enough to earn a spot at this school. Thankfully, Team Cervivor felt differently about my story.

One of the impactful things that happened during Cervivor School was the final morning.  All of the attendees were handed a sheet of paper with the following:

One thing I feel comfortable doing to advocate is: and I wrote “Like the Peyton Project for bullying I am going to crochet teal cancer ribbons and put them in public places with hashtags #CervicalCancer #Cervivor #DontFearTheSmear #CervicalCancerAwareness #CervivorAdvocate #MakePapAPriority”

 

When I got home, I went through my suitcase and pulled out the paper, I photographed it, and shared it on my Facebook.  I wanted it as a way to hold myself accountable. I still have this sheet of paper and I look at it every day on my desk.

I started a project to meet this goal: Operation Teal. I started out getting my ribbons crocheted, labeled, and distributed from Illinois.  Today these ribbons have been reported as far as Rwanda, England, Canada, Bahamas, South America, and Greece. Operation Teal has been very well received! Many people requested ribbons to help spread awareness for cervical cancer; many of these individuals had never heard of cervical cancer unless someone close to them were diagnosed.

This project was a lead into my active advocacy. I took my Facebook account from a page about my life to a full on cervical cancer awareness page. So much so that I believe people wanted me to start posting about my dogs in their outfits again, it is about finding a balance. People was told I would get tired of talking about cancer. Well, I didn’t and I couldn’t go back to posting just cute pictures. You see I had met women and put faces to cervical cancer; many women, including Erica, Sarah, Cemonia, Lauren and Tamika and each one of them had an effect on me. I was so moved by their stories, I knew I had to keep talking about this cancer no matter what because they matter. . . I matter.

Late 2016 and all of 2017 was all about advocacy from almost daily Facebook posts, proclamations from the Illinois governor, speaking at two Cervivor Schools, co-hosting events with my oncologist, news interviews, an ongoing jewelry fundraiser for Cervivor, and helping other women who were diagnosed with cervical cancer either online or in person. One interview with a local hometown newspaper was picked up by the Associated Press! I was invited to be a part of The Woman to Woman peer mentoring program. I was honored to have been asked to be a part of an advisory board as a patient advocate with the University of Chicago Medicine.

One of my most treasured moments of 2017 was while I attended Cervivor School, Delray Beach, Florida.  I was awarded the Cervivor Champion Award. I was completely speechless, and had no idea that when Tamika Felder, the founder of Cervivor, was speaking about the recipient, that it was me.  I never thought of myself as a champion. When I first started talking about my cancer story, I was doing it to help myself. It was very therapeutic to finally be able to talk openly about the chapter in my life called cancer.

Honestly, I cannot even believe all of this happened in such a relatively short time; it is just crazy how such a horrible event in my life and being a Cervivor School scholarship recipient changed everything for me. I am forever grateful to Cervivor. I don’t believe any of this would be happening had it not been for Cervivor! What started out as “I have to let my friends know this can happen to them”, has turned into so much more.

I do what I do because it is important to talk about and raise awareness for a cancer that in the U.S. alone takes the lives of 4,000+ women annually. So many people have never heard of this cancer; myself included and I want to change that. Did I want to be an advocate? Hardly. I was such an introvert and guarded person before cancer and Cervivor. I was a person afraid of public speaking and I certainly was not a person who could talk openly about my vagina and sex!

I have learned so much about myself and I know my WHY. That WHY drives me every day to talk about cervical cancer, raise awareness, and make impactful changes in the lives of the women I meet. I do what I do so no one else has to hear those 3 words. Today we have the knowledge and a cancer prevention vaccine that can eradicate this cancer. I feel very strongly that, as a Cervivor Ambassador, it is my duty to share what I know and to help others.

Check out Paulette’s story here:  http://cervivor.org/stories/paulette/

Paulette Apostolou resides in Illinois with her loving husband and two rescue Min Pins. She is the owner/designer of ThePartyDeeva.com and founder of Operation Teal; an awareness ribbon campaign she started in 2016 after attending Cervivor School Louisville. Contact her at  paulette@cervivor.org. She is available for speaking/advocacy events.  #WeAreCervivor

Cervivor School to Legislature

In September 2015 I was able to attend my first Cervivor School.  I traveled to San Diego and I did not know what to expect. I knew I was going to meet women who had a similar experience to me, women I could relate to, women with cervical cancer experiences.  I was no stranger to cervical cancer or sharing my story at this point, I had first been diagnosed in 2012 and I started sharing my story on my blog so that others could hear my story.  I had the opportunity to share my story on video so that it could be shared for #CCAM 2016 to medical providers by a company.  I thought I was sharing my story impactfully.  What was I going to learn at Cervivor School?

I can remember sitting in Cervivor School in aww of all the women surrounding me.  Amazed at the amount of women who were ready to get out there and share their personal lives and stories.  It was great to see all the different ways these women were ready to advocate.  It added fuel to my advocacy.  It was like igniting a fire.  I transitioned my blog from just a place that I could share information about my story to a place where I could share information with purpose.  I started using a call to action approach whenever possible.  Cervivor School gave me the tools to reach out to media and have my voice heard.

All of the tools I have learned from Cervivor have helped me to grow in my advocacy.  I learned a lot about speaking to legislators and how to reach out effectively.  My Cervivor story being on the the Cervivor website has been really beneficial for me because if I am working to contact someone I can easily share my story in a great format.

One year ago I was invited to go to the Indiana Statehouse and testify on behalf of House Bill 1278.  This is a bill that was written so that Indiana would need to develop a strategic plan to reduce the mortality and morbidity rates of cervical cancer by December 2018.  I was honored to testify in front of the Senate Health Committee as well as the House Health Committee.  In each committee the HB1278 passed unanimously.

I was welcomed to be in attendance when Governor Holcomb signed the bill into law; a bill that passed unanimously through the entire Indiana Senate and Indiana House.  It was such an amazing experience.  It even helped check something off of my Living Life List – I was able to help pass a bill to make a difference in the cervical cancer space.

Yesterday I was invited back to the Indiana Statehouse by Representative Sharon Negele, the author of HB1278.  I was invited in for a press conference where she was presented a Proclamation in honor of January being Cervical Health Awareness Month.  Following the press conference I was able to go onto the floor in front of the Indiana House and share my excitement with the representatives that Indiana is placing value on cervical cancer awareness and is dedicated in reducing the mortality and morbidity rates of cervical cancer.

I am so glad that I was able to attend my first Cervivor School and become a Cervivor Ambassador.  All of the tools I was given led to helping to make such a huge difference here in Indiana.

Have you shared your story on Cervivor yet? Follow this link to share your Cervivor story.  It is organized into a great format with prompts that can guide you through sharing your story.

Are you interested in becoming an active advocate?  Cervivor School 2018 information is available here.