advocacy

My Sidekick Sheba

When I was diagnosed with cervical cancer, I never imagined the journey would include a new sidekick! I finished stage 3B cervical cancer treatment around August or September of 2018. About three months after treatment, I began to experience trouble going number two. It was the worst feeling ever. The times when I could go, it was excruciating, and with plenty of blood. I started to go number two again, but the weirdest thing happened. It was coming from my vagina. I had developed a fistula due to my radiation treatment. 

I went into the hospital immediately and was admitted from December 31, 2018 until January 16th, 2019. During that time, they inserted a nutrition PICC line, checked my stool, inserted a catheter, and prepared me for surgery to remove some of my bowel and colon. My doctor explained that there would be a possibility that I would get a colostomy and he may remove my uterus, but it depended on the damage they saw inside. When I woke up, I was informed that the surgeon had removed my right ovary and fallopian tube, and I had a colostomy bag.

The nurse gave me care instructions and I learned to care for my new sidekick. I went through stages of confusion, anger, fear, and insecurity. After getting used to it, I named it, Sheba, and called her my sidekick. I’m a bit more comfortable with it now, but sometimes I still struggle with public participation because of how active it is. 

I’ve been diagnosed with body dysmorphic disorder since receiving it because of my constant worry about how I look with a shirt bulge or certain things that I now become obsessed with. Although I’ve gone through these struggles, I’ve learned to appreciate having my colostomy bag, as it has saved my life. I feel better knowing I can use the bathroom without getting infected or hurting myself even further. 

I get better each day as I learn and grow. I am living and taking it one day at a time, as I make new goals and step out of my comfort zone. I wouldn’t have it any other way. I am a CERVIVOR!

Kyana Johnson resides in Orangeburg, South Carolina. She is a stage IIIB cervical cancer Cervivor, colostomate, and Marriage and Family Therapy student. Cervivor has always been Kyana’s safe space, information hub, and a great place to come together for a cause greater than us. Cervivor is her inspiration for her advocacy efforts. 

Making My Survivorship Count

Coretta Scott King once said, “The greatness of a community is most accurately measured by the compassionate actions of its members.“  Now, imagine a community built brick-by-brick by the survivors of trauma; a cancer diagnosis. 

When we look around, we see many familiar support groups and organizations. Even if we’re not personally affected, we understand that these are tiny communities ready to support individuals with similar afflictions. 

Then, there are patients and survivors who are devastated by a cervical cancer diagnosis and, when they emerge from the darkness of life-altering surgeries and brutal treatments, they are hard-pressed to find that beacon that heralds them to the arms of other cervical cancer survivors.

What if there was a community of open arms that also provided you with the voice and the feet with which to make your survivorship count? To make a difference so that others are imbued with knowledge and the inner permission to self-advocate. Fortunately, an organization like that exists in Cervivor! 

Although my staged cancer story began five years ago, my attempts to prevent that cancer began 26 years prior when I was treated for high-grade pre-cancerous cells. Unfortunately, at the time, there wasn’t a lot of information out there about cervical cancer, other than this cancer is related to HPV. I was 46 when I found out that something I’d dealt with as a young woman was back to seriously try to end my life. 

It wasn’t just about letting people know about their Pap tests anymore, it was also about dispelling the stigma that came along with a below-the-belt cancer. As advanced as our society is, we still, in some ways, carry provincial attitudes and morays regarding the female reproductive system. My goal after coming out of treatment and finding a more distinct voice was to educate not only my local community about cervical cancer, but also to break down barriers. These stigmas can lend a hand in the disproportionate amount of needless suffering due to this cancer.

Lorie at Cervivor School Nashville

My advocacy is a calling that I feel obligated to answer. In these last five years, I’ve met with people one-on-one, in groups, and online to facilitate educational forums on HPV, cervical cancer, and preventative testing. I’ve held fundraisers and donated my time to research organizations. I serve as a cancer mentor for the newly diagnosed to help them in their journeys with cancer. These mentees seek guidance from established patients who’ve been through it all. They are matched with mentors who closely align with their needs. During this mentorship, the mentee feels informed, supported, and more at ease with their treatment modality. 

Along with mentorship, I also share my story through multiple social media platforms. I have shared my cancer experience with several cancer centers to provide a patient perspective for the oncology professionals and to provide hope for the oncology patients who see my videos and read my story.

As a Cervivor, my active intention is to broaden the reach of my voice by advocating about the HPV vaccine because, ultimately, we could eradicate HPV-related cancers through vaccination. I love that our Cervivor community aligns with my passion to reach as many people as possible. We do so, not only with compassion and kindness, but also by lending strength. 

I am but one person and I have a story. Together, we are a village and our stories are powerful.

Lorie Wallace is a five-year cervical cancer survivor and recent Cervivor School graduate. She has dedicated her life to cancer advocacy and support by facilitating community education forums on cervical cancer and HPV awareness. Lorie also serves as a cancer patient mentor for the newly diagnosed and for caregivers of cancer patients. She is a fur mom and a wife, who enjoys painting, music, and is a lifetime student of history.