HPV

An Advocacy Spark

From A Tiny Spark May Burst A Flame – Dante Alighieri

A few months ago I started planning for what would be my “coming out” party so to speak.  Kind of like a debutante coming out to society, I wanted the world to know that I had cervical cancer caused by HPV.  Wow that felt so good to type.  The event was planned for January during Cervical Cancer Awareness Month and the idea was simple, have a few close family and friends over to hear my story, watch the movie Someone You Love: The HPV Epidemic and answer any questions.  I had no idea how much of impact this event would have.
So let me rewind a little bit and tell you what brought me here and my “why”.  In 2009, I heard those three awful words, “you have cancer”.  I had cervical cancer and it was a result of HPV 16 and 18.  What is that you ask? HPV is the human papillomavirus and there are more than 100 types of HPV and just a little more than a handful are high risk or cancer-causing.  HPV 16 and 18 cause about 70% of cervical cancers.
When I was first told I had cervical cancer I had no idea what that meant.  I had no idea what HPV was.  More importantly, I didn’t know anyone who had or was going through what I was.  It was extremely lonely.  Not only could I not relate to others, I had family members who associated HPV with a stigma and told me things like it was because everyone sleeps around.  That hurt beyond imagination.  I was silent about HPV.  Someone I looked up to made me feel like I did something wrong.  But I didn’t, they were just ignorant.  At the time I did what I do best, I went to the bookstore to find anything that may help me.  8 years later, 1 LEEP, 2 cone biopsies, an infection that almost killed me, 11 lymph nodes removed, and a hysterectomy I have finally found my voice to tell my story, I discovered “my why”.  I have finally found the courage to talk about HPV.
That brings me to my event, my “coming out” so to speak.  There were about 15 people in total that included family, friends, and neighbors.  Most everyone there had children ranging from around age 7 to their early 20s.  To make the evening more special I was honored to have Tamika Felder, the founder of Cervivor there by my side; and I was honored to have Kelly there representing Team Jillian.  Jillian is a Cervivor sister we lost this past September and I love that her close friends and family honor her by continuing to talk about cervical cancer and the HPV vaccine.

I could not have asked for a better evening, we even had a teal cocktail made by the very awesome Justin who was sporting a teal shirt.  Before the start of the movie, I gathered everyone
around to make a few comments and tell my story.  It was the first time I did this to a group.  I was so nervous, but once I started talking it was so easy.   I believe it was said in Cervivor School, no one knows your story better than you.   My best hope for the evening was that I would tell my story and we would watch the movie.  My goal was getting me over the nerves hurdle with people I knew.  But wow my goal was exceeded.  At the end there were questions.  There was interest.  There were women who were ready to go back to the doctor.   Moms who wanted to share the information with other moms in our community, people who were happy their kids had the vaccine, but they didn’t understand at the time how important.  Knowing that I was able to reach someone with my story, for me this was most definitely a tiny spark that had lit a mighty flame.
January is Cervical Cancer Awareness Month – there is still time.  Are you ready to have your “coming out” and share your story?  Cervivor is a great place to share your story and it has an easy to follow format which can guide you.
— Cervivor Amassador Tina Vetreno
Read more about her story here: https://cervivor.org/stories/tina-2/

Living Advocacy List

If Cervivor School Florida taught me one thing, it was to be absolutely fearless in achieving my goals. It proved to me that I could accomplish anything I wanted to. It also made me realize that I will never be alone in my endeavors. Cervivor is a network of women all across the world looking to eradicate cervical cancer. Together we accomplish those goals and I’ve decided to come up with a list to help me in my advocacy efforts. I like to think of this list as a living and breathing document. It will evolve as my advocacy moves forward. This is my personal Living Advocacy List:

Goal 1: Make the Cervivor Presence Known on Social Media

My first goal is something that takes almost no effort on good days; dedicating ten minutes a day to engaging with Cervivor on social media can make a huge difference. I enjoy it because anyone can find numerous factual articles on Cervivor’s website, Facebook, Twitter, and Instagram; you can use tools like socialfollow for Instagram to make sure that the message spreads faster. The best part of sharing on social media is that it can reach several people in a matter of minutes and each social media platform as the potential to reach a different audience.

Using social media can also help you to gain the sense of support. You can physically see that you are in no means, alone, ever. Sometimes that support makes all the difference.

 

Goal 2: Discuss HPV More

There’s a weird stigma in our society regarding HPV. It’s more common than we know and approximately 80% of our population will have it at some point. Most fail to realize there is testing for women only and they are currently undergoing ways to screen males in the research field. HPV doesn’t just affect women, it affects men too. I hope to discuss this more in person, on social media, and to anyone who will talk to me about it.

Goal 3: Increase my Community Connections with Knowledge

It is my goal to use my existing community connections with knowledge related to HPV and/or cervical cancer. As a cancer survivor, a volunteer, a dental assistant, and a social worker, I see many ways I can discuss HPV with my community. I play so many roles and sometimes I don’t realize what kind of impact I can have. I will never know unless I try.

Goal 4: Reach Out to Parents and Children

Another goal of mine is to increase awareness about HPV vaccination. I plan to achieve this goal by reaching out to and educating parents and children of vaccination age is extremely important. From the ages of 9-26, you can get the HPV vaccination. That’s quite a range of age to advocate for and again, it’s not just a female vaccination. It is a vaccination young males should be getting as well!

Goal 5: LOBBY!

Our voices need to be heard because our stories are real. There is so much going on with our political atmosphere and I want to get involved. Cervivor can make a difference, I can make a difference! If we want to save lives, this is an important tool.

Goal 6: Perfect my Story

I want to perfect my story and focus on telling it impact fully. There are many ways to tell a story. Many of you may not understand what this disease does unless you hear my story. There may only be a few ways you can connect to my story or some may not connect at all. That’s okay! Maybe you know of someone who has a similar story or you may meet someone in the future and it will be one of those “a-ha” moments. You know exactly who to refer them to!

Goal 7: Write More

Writing is one of the very things I find therapeutic. It helps me in advocating, telling my story, and it releases emotions in a way that I may not be able to otherwise. We all know how much emotion is behind a cancer diagnosis and as soon as it’s over we tend to forget how we are supposed to move on. I think that through writing more I can continue to use my writing as a tool for my advocacy.

Goal 8: Talk About HPV and Cervical Cancer Treatment Side Effects

HPV and cervical cancer destroyed my chance of having my own (biological) children. It took away my menstrual cycle. Many women would be excited over the chance of not having a period but do you know how abnormal that actually makes a woman feel? Do you know what it’s like to try to date or to have a normal relationship after going through something so traumatic?

Did you know that many women who have undergone treatment for cervical cancer have to utilize a dilator on a regular basis? Can you imagine what it’s like to have to use a piece of cold, hard plastic to make sure you maintain “normal” function of your womanly-parts? This is what life after cervical cancer can be like. People should know that this cancer doesn’t end at remission. It is a lifetime of changes and challenges.

 

So, what would be on your personal Living Advocacy List?

Learn more about my story here: https://cervivor.org/stories/morgan/