AYA Week Reflections

As AYA Cancer Awareness Week draws closer, I am reflective on how much the AYA cancer community means to me. I recall how for two years after treatment, I didn’t even know this community existed and how today, I can’t imagine my life without it.

During my treatment in 2013, I didn’t want any part of the AYA cancer community because I didn’t want to be labeled as the girl with cancer. I did not want to be the youngest cancer patient in the radiation waiting room, or to be told yet again that treatment would be easy because I was young (by the way, it wasn’t), or to become more familiar with insurance deductibles and FMLA than someone twice my age. I just wanted my pre-cancer life back. I wanted to go on dates, to go to the state fair without the worry of being immunocompromised in a large crowd, and to be able to eat whatever I wanted without getting sick.

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I first met a fellow AYA cancer survivor two years after my treatment and it changed my life. I was no longer alone. Someone finally understood me. I had a community and I felt like I belonged for the first time in a long time. Alongside other AYA cancer patients and survivors, I was able to process what I had just gone through and I gained knowledge about what survivorship should look like. This growth gave me a sense of purpose as an AYA cancer survivor that I needed.

Today, I am a seven-year AYA cervical cancer survivor. I share my story with a lot less fear than I did five years ago because I want people to see that I am what an AYA cancer survivor looks like. I want people to know that a cancer diagnosis in your 20’s and 30’s is difficult to navigate, not only during treatment but as a survivor. I also share my story with medical professionals so that they can better understand the unique needs of the AYA cancer community. And I mentor AYA cancer patients and survivors, so they don’t feel the loneliness that I felt during and after treatment. No one should go through cancer alone.

I’ve watched the AYA cancer community grow since 2015 from a few scattered voices to one loud collective voice. This community’s advocacy and momentum has generated much needed attention and change that will impact not only our lives, but the lives of future AYA cancer patients and survivors. During AYA Cancer Awareness Week, we deserve to recognize and celebrate our community’s accomplishments.

Emily Hoffman is a seven-year cervical cancer survivor who was diagnosed with stage 2B cervical cancer at age 30. After cancer, Emily didn’t realize she even had an advocacy voice until she attended her first Cervivor School in 2016. Today, she is a patient advocate and active Cervivor Ambassador who shares her cancer story to raise awareness for ending cervical cancer and to educate others on the importance of cervical cancer screenings and prevention. Emily is the recipient of the 2020 Cervivor Spark Award. She is currently pursuing her certification to become a cancer registrar.

“On Wednesdays we wear Pink”… wait, what?

That is something my son Matthew always said to me, and I always laughed.  I had no idea that line came from the movie Mean Girls, nor how much I would remember this comment and how it evolved and shaped my Teal & White Tuesdays.  

I knew pink was the color for breast cancer as I had already been down that path.  I had no idea what the ribbon color was for cervical cancer. When I received my diagnosis in 2015, I had to research the ribbon to find out what my color of ribbon would be. Deep down somewhere in my subconscious, I knew I would be wearing that color for the rest of my life.  

After my lengthy treatment battles, I found Cervivor. This became my “go to” group for information, help and support.  I loved it when they said to wear teal & white on Tuesdays.  An idea began to form.  

I attended Cervivor School in 2019 with much help and support from my friends and family.  I honestly don’t remember Tamika’s exact question that day at Cervivor School, but I immediately remember my response, “On Tuesdays, we wear Teal and White.” Thanks Matthew, for the quote from so many years ago!! The idea continues…

I have bought my son several ties and dress shirts in the teal and white theme that he proudly wears to work. I make an effort to post something on my social media accounts about #TealAndWhiteTuesday every week to remind people about cervical cancer, to get your cancer screenings, to get your vaccinations, and to promote awareness. The idea is growing.

In January of 2020 during CCAM, I was invited to Matthew’s place of employment, Hy-Vee. They did a promotion during that year to promote cervical cancer awareness. I had so many more plans for public awareness campaigns, but 2020 had other plans for meeting people.

I was forced to refocus my efforts, and the idea began to fully bloom.  Pandemic boredom = creative, crafting mind flow.  I started off with buying printable iron on sheets and made one shirt.  I wanted more.  I created a better graphic design and had made several more shirts.  I handed out twelve shirts to people, and five of them went to high school age girls. We discussed cervical cancer and the need to take care of yourself, even at a young age.

I made and sold teal and white kitchen pot scrubbers, with proceeds going to Cervivor. I attend the Cervivor virtual holiday party and am now on the CCAM Planning Committee. I tell everyone I meet that health is a PRIORITY in life and do not ignore it! 

I post about cervical cancer and Cervivor so often now on social media to spread the word. I talk about it with my friends and family. I am not ashamed or too shy to share my story with others, no matter who they are.  I want people to know how this affected me, and how I am a stronger person now for the ordeal I survived.

The impact that Cervivor School had on me to advocate and talk about this has amazed even myself.  I was not even sure about going, and here I am a year later involved as I can be and loving every minute of it.    

I love #TealAndWhiteTuesday and dress in it every week, even if I am not leaving the house to go anywhere. I am forever grateful to my family and friends in supporting me to get the word out, and I love how involved they have become to spread the word as well.

Have you ever noticed how many people actually read the t-shirts people wear? Have you stopped yourself to read someone’s shirt as they walk by you? It offers an ice breaker without having to say a word.  

“On Tuesdays we wear Teal and White.” Spread the word.

Karen North lives in Liberty, Missouri. She is a retired registered nurse. Her world is her family, fur-babies, and friends. She is a six-year breast cancer survivor and a four-year cervical cancer survivor. 

Read Karen’s Cervivor story.

Read Karen’s blog post on being both a breast cancer survivor and cervical cancer Cervivor