Cervivor School Louisville Changed My Life

Diagnosed with cervical cancer in 2014, at the age of 33, I went through a wide array of struggles, both physical and mental. I underwent a hysterectomy, five rounds of chemotherapy, and 28 rounds of external radiation. It was by far the hardest thing I’ve ever endured. I felt like I’d lost so much of myself and was so frail, no matter how much support surrounded me. Cervical cancer took my fertility, threw me into menopause, and caused anxiety issues and fears that I still deal with to this day.

Amanda Arm At Cervivor School LouisvilleI learned about Cervivor while undergoing treatment. I started following the organization on Facebook and reading information on their website. But it wasn’t until this year that I felt like I was truly ready to be part of what they represented. I watched as they hosted various Cervivor Schools, hoping that eventually, one would be in my home state of New Jersey so I could attend. But when they put out an announcement saying they’d be awarding a few scholarships to Cervivor School Louisville, I jumped on the possible opportunity and sent in my story immediately. When I found out I was chosen I almost started to cry, this was a new journey I was being led toward.

When I landed in Louisville I ran into my roommate while getting off the plane (we were on the same plane and didn’t even know it). We’d never met, but we connected so quickly because there was so much we could relate to. That’s how it felt the moment I met each one of the amazing women who attended the Amanda and new Cervivor Friendsweekend event. Throughout the weekend we spent time together both during and outside of our “classroom” time. (My favorite highlights on our downtime included spending time with some of my newfound friends having dinner at the Hard Rock Café, drinks at Howl at the Moon, and taking a stroll back and forth on the walking bridge across the Ohio River.) Through Cervivor School we took a step together to move past what we had dealt with and learn how we could help others.

One of the hardest things I faced with my own cancer diagnosis was knowing I got it because of a virus. There’s always been this stigma surrounding HPV because it’s known to be a sexually transmitted virus. But what people don’t understand is that the virus is not only transferred through sexual intercourse, it’s transferred through skin to skin contact. HPV doesn’t care if you haven’t had intercourse, it doesn’t care if you’ve used condoms or stayed a virgin until you were in your 20s. This is why it is presumed that approximately 80% of women have some form of HPV, and many of them don’t even know it. And today, after much advancement, there’s even a vaccine to help prevent against the virus.

Cervivor School offered me knowledge I need to help others. I didn’t want my story to end with me moving past my cancer, because it will always be a part of me in some way. I wanted my journey to give me the strength to help other women understand HPV and understand how they can prevent having to go through what I did.

You see, in my case, I had known I had HPV since 2009 when a test came back positive for the virus. My HPV went dormant for a few years and then came back. In 2013 I started having symptoms and knew something wasn’t quite right so I went to my doctor. She told me she felt I was going through hormonal changes, but ran some tests just in case. It wasn’t until I returned to see her in 2014, my symptoms worsening, that I found out she hadn’t done a Pap during my previous visit because I’d had two years of clear Pap tests before that. She did other tests to check for infections, but not a Pap. With all the swabs she took I only assumed she had done one. This time, when she did an internal exam, it couldn’t have been clearer that something was severely wrong. By the following week the results were in that I had cervical cancer. If the proper tests had been done earlier, my story could have been completely different.

Cervivor School gave me the tools and helped raise my voice so I could be Amanda raising up the Cervivor Signempowered enough to tell my story. To help me inform others that they don’t have to go through an HPV-related cancer. To be their own best advocates by going to their annual well-woman visits and making sure to get the tests they need. And to listen to their bodies, because each of us knows our body better than anyone else ever will.

At the end of Cervivor School Louisville, I left with knowledge, courage and strength. I’ve gained friendships that will forever flourish as we grow and move past cancer and toward advocacy. I never thought that such a heart wrenching and terrifying period of my life could bring about something so amazing.

Today, I’m already working towards being the advocate I am choosing to be. I’m planning a Cervivor Meet-Up in my area to happen this October and hoping to eventually work to bring about Cervivor School New Jersey. I’m constantly reminding women I know through social media about getting their well woman visits as well as offering information on HPV-related cancers and the HPV vaccine. I feel like if I can inform just one woman by sharing my story and remind her how important it is to see her doctor, that’s one less woman who may have to hear the words, “You have cancer.”

Amanda Tanay resides in New Jersey with her loving and supportive family. She works as a Copy Editor and Social Media Coordinator for the Monmouth County Park System and is an aspiring writer. 

Our next Cervivor School: Marion, Iowa https://www.eventbrite.com/e/cervivor-school-iowa-tickets-26834926989

Stirrup Stories Recap

By Cervivor Ambassador Curtissa Clay

A few weeks ago, I had the opportunity to fly to Washington, D.C. and attend “Stirrup Stories:  Narratives Beyond the Speculum.”

Stirrup Stories logo

It was a celebration of Cervivor’s 10+ years of cervical cancer advocacy that included a benefit performance, reception and dinner.  It was an amazing night where cervical cancer survivors from all over the country shared their stories.  It was an event that I could have never imagined when I was first diagnosed with cervical cancer in 2013.  That night, we laughed.  We cried.  We cheered…

When I was diagnosed with cervical cancer and told that I needed chemotherapy and radiation, I needed three things- I needed to know that I was not alone.  I needed strength to go through treatment. Most importantly, I needed hope. I believe that Stirrup Stories gave the women all that and more.

As soon as I walked into the event, I felt the excitement in the air.  There was good music flowing.  Signature teal drinks were

With my new friend Brandi
With my new friend Brandi

being served. Hors’d oeuvres were being passed. There were lots of bright smiles.  Many women were dressed in their beautiful cocktail attire.  Oh, and there were some well-dressed men there to support the cause as well.   The building was full of great energy.

As the evening officially started, we were welcomed by Michel Wright of Majic 102.3 and introduced to Tamika Felder, the founder of Cervivor.   We were also introduced to Sarah Fraser, a long-time supporter of Cervivor’s work.  Then, the meat of the evening began.  Cervivor’s began to share their stories.  These women talked about it all with no holds barred.

Here is just a taste of what we heard from these amazing women: 

Vanessa talked about being told that she had pre-cancerous cells, yet she only heard the word CANCER!  It took persistence over the course of 5 years to ensure that her pre-cancerous cell never became cancer. She is what Cervivor is fighting for.

Jennie was raped at age 19.  She suffered from PTSD. She didn’t want to go the gynecologist where she might feel vulnerable and violated all over again.  So, it wasn’t until she was 34 that she had another Pap test.  That day she was diagnosed with cervical cancer. She courageously fought through intense anxiety each time she was poked and prodded in order  to cure her cancer.  She reminded us all that no one deserves to be raped and no one deserves cervical cancer.  

Christine recalled getting an unexpected call, because her doctor found SOMETHING.  She was busy being a rock star and living life when she was diagnosed with cervical cancer. Her and her husband were planning to have a family, but she lost her fertility due to treatment and her husband left.  It was tough and depressing, but her story didn’t end there.  She has become a huge advocate in the fight against cervical cancer.  She puts on concerts to raise money and spread awareness.

Lori recalled the moment that her cervix became a new, uncharted episode of Star Trek.  And Star Trek episodes always end in resolution, right?  Lori will celebrate 9 years cancer free this month.  She said that it was time to win this war against mutant, alien cancer cells.

We heard from Carol, a woman who is currently living with cancer.  She hopes that one day there will be more treatment options for her.  In the meantime, she has decided not to count the years, but to count her sunny days.

Emily introduced us to her partner, the speculum.  Yes, she whipped one out, right on stage. She always kept her annual appointment with the speculum.   However, she didn’t realize how vital her annual date was until her results came back abnormal and she had to have surgery.  Today, she knows why she shows up each year and she wants others to be informed as well.

We also heard from Heather who shared a letter to her daughter.  One of her biggest fears was that she would die and her daughter, Lily, would not remember her.  Yet, it’s been 9 years since she fought and beat cancer.  She wants her Lily know everything that she needs to know to be empowered when it comes to her health.  She also wants Lily to know how her cancer, her survivorship and advocacy work have become an important part of who her mom is.

We also heard from Catherine, who, through spoken word, shared how she beat cancer as a young mother and college student years before there was Google or Gardasil.

Then, we heard from Joan who lost her daughter, Iona, to this disease last year.  As a nurse, she wanted to save her daughter, but her hands were tied. Joan doesn’t want anyone else to go through the pain of losing a daughter.  She wants to spread awareness.  She urged everyone to get their annual exams, to do it for their loved ones, to do it for Iona.

Erica talked about time.  She is living with cancer and choosing quality of life over quantity.  Her biggest fear is not dying; it’s what she would leave behind when it comes to her husband and her son.  Her son’s biological father would hold all the cards.  Her husband and son could lose her and each other. Though there is a lot of uncertainty, she has chosen to defeat cancer by how she lives her life.

Alegra shared a narrative about the painful reality of losing her fertility due to cervical cancer. She is passionate about cervical cancer advocacy and teaching other what she knows.  She believes that no one deserves to die of cervical cancer, but everyone deserves a crown.

Pam shared a poem where she talked about the life of a survivor- the countless appointment, surgeries, scans and the anxiety.  “…We have a way to keep HPV and this cancer at bay, So why are there still so many women dying today.  Educate the community, your family, your friends.  That is the only way that this cancer will end…”

unspecified-77We also heard from Dr. Mildred Chernofsky.  She shared how we’ve entered a very hopeful time for cervical cancer, because we have a chance to eradicate it.  She asked us to honor all the women sharing their stories by going to our appointments, getting the vaccinations and getting screened.

We also had the honor of hearing from the lovely Traci Braxton of WE TV’s Braxton Family Values.  Traci has family unspecified-31members who have been touched by cervical cancer.  And when she found out that she had abnormal cells on her cervix, she decided to take charge of her health.  She encouraged the audience to get the HPV vaccine (Read guidelines here), get the Pap test and get the HPV test.

We also had the opportunity to honor the family of Henrietta Lacks. In case you haven’t heard of Henrietta, she was the unwitting donor of healthy and cancerous cells that were biopsied during her treatment for cervical cancer in 1951 at John Hopkins Hospital.  Her cells have led to significant medical advances. You may read more here.

Then, there was Keke Wyatt!  She wrapped up the evening with a soulful performance. unspecified-138

It was an impactful and informative evening where the audience became truly engaged.  I heard that some guests were starting up their own health discussions at their tables.  In some cases, they were sharing very personal information too.  One woman at my table shared that she was shocked to learn that she needed to ask for and HPV test in addition to the Pap test.  She said that she was going to ask her doctor about getting the HPV test.

Curtissa Selfie at SSThough I did not share my story on stage that evening, everyone has a story and everyone can have a voice in this fight against cervical cancer.  Once I became associated with Cervivor and attended Cervivor School last fall, I became  empowered.  I started to share my story with anyone willing to listen. Women are making doctor’s appointments, because of what I’ve shared.  The hope is that the stories shared that night will be far reaching and lead to more action and more saved lives.

Again, we laughed.  We cried.  We cheered… Because these women shared their journey, shared their strength and gave us hope.