Kilimanjaro Cancer Crusher

It’s funny the way life has a way of twisting and turning in unpredictable ways. I never imagined that I would have cancer, let alone cancer in my vagina. I also never imagined that my diagnosis would lead me around the world to climb Mt. Kilimanjaro. But that’s exactly where I am heading in just two short months.

My adventure really begins with an abnormal Pap Test at the age of 34 after a routine gyn checkup. The moment the doctor told me I had HPV was something I will never forget. You could have knocked me over with a feather. I was surprised and mortified that I had an STI. Me? No way! But, yes, I am one of the 4 out of 5 Americans with HPV. Despite the several procedures my doctor tried to rid my cervix of the dysplasia nothing was working and I eventually had a total hysterectomy. HPV wasn’t done with me, however, and three years later symptoms returned and I was diagnosed with stage 2 vaginal cancer. This time surgery was not an option and I had two months of chemotherapy, external radiation and internal radiation. The treatment was successful and I have, very thankfully and gratefully, been cancer free for almost three years.

My cancer experience immediately brought life into focus and forced me to really examine what I was doing with mine. I rapidly decided upon 2 driving ideas….1) Although I was weaker and sicker than I had imagined possible, I was alive and recovering. I was determined to outlive my diagnosis and have as much adventure and travel as possible. And 2) I would dedicate my survivorship to prevent other women from living my experience and make my heartbreak count for others.

Since my treatment ended I have been working diligently on these two missions. I’ve learned how to whitewater kayak and paddled some of the most beautiful rivers and lakes in the South, and hiked the Rockies in Colorado and the Sierras in California. I met and was inspired by the adventure of an ovarian cancer survivor, advocate, and friend of mine to climb Mt. Kilimanjaro in Tanzania. Me? Sure, why not?! During this time I also became a passionate advocate for Cervivor and share HPV and cervical/vaginal cancer awareness and information at events and through social media.

Very quickly my two missions began to converge. My preparation and research of Kilimanjaro and Tanzania naturally brought me to global cervical cancer advocacy. I quickly uncovered the heartbreaking cervical cancer burden in Tanzania. Globally, more than 500k women will be diagnosed with cervical cancer and 270k of those women will die, 90% of them in underdeveloped regions. Women in Tanzania with the same diagnosis as me suffer from an astounding 80% mortality rate. A tragic combination of lack of reproductive health knowledge, access to medical treatment, trained professionals, and basic supplies usually means that women are diagnosed at more advanced stages than the typical American and often do not receive treatment.

The fact that so many women die at the hands of an almost completely preventable disease every year is a tragedy of epic proportion. There was no way I could travel to Kilimanjaro without trying to do whatever I could to help these women and communities. I pulled together a committed team of people, including my own gyn oncologist, to climb Kilimanjaro with me. We are dedicating our climb and have successfully met our goal to fund a cervical cancer screening clinic in Tanzania with the organization Cure Cervical Cancer. Our team leaves for Tanzania later this summer for the trip of a lifetime including a tour of a remote mobile cervical cancer screening clinic in Moshi, a 7-day hike up 19k feet on Mt. Kilimanjaro and a safari. We are training regularly, hiking a lot, and currently trying to coordinate our ridiculously long packing lists.

I came across a Steve Jobs’ quote the other day that struck me, “The people who are crazy enough to think they can change the world are the ones who do.” This whole adventure began with a “crazy” idea and a passion to DO something. With the help of my family, friends and supporters, my dreams are coming true and I could not be more humbled and grateful. My cancer does not define me, nor has it held me back. It fuels my fire to live my life with purpose and adventure. I hope my experiences inspire YOU – what’s your next adventure?

Read Sarah’s Cervivor story here.

Follow along with the Kili Cancer Crushers’ team on Facebook or Crowdrise.

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:  https://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