A letter to my mother 20 years after she died from Cervical Cancer

Dear Mom,

I often think of you as my guardian angel and that you can see me. You can see me driving a car fast like you begged me not to do so many times. You see me laughing. You see me with my friends. You see me making a tough decision, and having to be assertive. And when you see me and my brothers, you smile. It’s your big wide, gapped tooth smile. You smile and you put your head down, like I do when I smile. Sometimes with the smile you shake your head. You approve of what you see. You are pleased with us.

Do you know that January is Cervical Cancer Awareness month? Sometimes I really wish that I didn’t know that.  I really wish that the day in 1992 when you told me that you had cervical cancer never happened. Your smile was not there. You were sitting in a chair in your bedroom and you told me that you had cervical cancer. When you said it, your eyes closed and you grabbed your hands together. At the time, to me it felt like you were confessing something. I was too young and naïve to understand that you were scared. You said that there was an 85% survival rate. Because I thought this was a confession, I was relaxed. I relaxed during the whole conversation. There was no way that you would die.  My young, naïve mind said death happened to other peoples’ moms, not my mom.  Besides, I thought to myself, there would be no point of your death. You were too much of a good person.

I remember in 1995 coming to see you in the hospital and I was still relaxed.  My grandma was not. She pulled me into the hospital hallway and said that you were not going to get any better. In that moment, my heart went from the 8th floor of that hospital to laying on the ground on the street below. You were not supposed to die.

But in 1996 you did die. And I was left with a myriad of questions about the thing that took you from us. I did not hear many people talking about cervical cancer. What was HPV? How come you were not part of that 85% that lived?

In 2006, ten years after your death, I met a woman who explained all of this to me. Her name was Tamika and she was on a journey. She was racing to beat the clock to eradicate Cervical Cancer. When I learned about her journey, I saw Tamika and Friends as an army with soldiers. You always taught me to fight. I picked up my weapon and joined ranks with these cervical cancer soldiers. I was never going to let another woman get cervical cancer.

I have learned so much since you have been gone mom. I have learned about Henrietta Lacks, the different strands of HPV that cause cervical cancer, and how it is incredibly important to go to the gynecologist. And I have learned that sometimes bad things happen to good people. It is sad to admit this mom but your death has taught me just as much as your life.

Mom, I am faced with the cold fact that this year, you will have been out of my life for the same amount of time that you were in it.  I hope that you see that the world has changed and that I have changed. You always taught me to help other women and I have been doing that. I once met a girl who was in a job training program. I was doing a group counseling session with her and other young women. We talked about ultimate life goals. The girl had been quiet for most of the group. When it was her turn to say what, she wanted most in the world, she replied, “I just want to make my mother proud.” I touched her hand and I said, “Me too.”

I cannot see you, but the thought that you are smiling at me motivates me on my darkest days. It makes me want to talk to people about cervical cancer, organize communities, be a better mental health provider and be a servant of the Lord.  I do not know if you can really see me, but I have realized that I see you every time I do an act of kindness.

Hugs and kisses.

Your only daughter,

Lilly

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