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. 

Cervivor Takes Manhattan!

As we wrapped up the last weekend of Cervical Cancer Awareness Month (CCAM), we headed to New York for a monumental event that started off this year’s Cervical Cancer Summit powered by Cervivor.

Founder Tamika Felder, along with members from the Cervivor community, were invited to ring the closing bell on Nasdaq. Tamika’s call to action to the world, “Join us in this mission because no one should die from cervical cancer.” And the world is listening!

We kicked off the 2023 Cervical Cancer Summit in partnership with Jacobs Technion-Cornell Institute, it was truly an inspired and innovated conversation with Eve McDavid, a cervical cancer survivor and Fem Tech entrepreneur, along with the brilliant Dr. Onyinye Balogun and Fernando Gomez-Baquero. By using the patient voice, they are developing a revolutionary new device that will transform Brachytherapy, which still uses the same barbaric process that was developed in the 1970’s, with no regard for the actual female anatomy. We are excited to see more innovations like this happening in treatment altogether!

We continued with the patient voice perspective with members of the Cervivor community speaking on the Power in Patient Voices with Arlene Simpson, Yvette Torres, Kadiana Vegee and Kate Weissman. They shared how the collective Cervivor voice can bring more visibility and influence change, working towards our common goal of ending cervical cancer.

Dr. Rebecca Perkins joined us for Expert Hour on all things cervical cancer and HPV. You can tell that Dr. Perkins is very passionate about educating others to understand the importance of HPV vaccination and cancer prevention. “HPV vaccination is cancer prevention!”

The day continued with a session on Emotional Resilience: Survivorship & Support. Community members Anna Ogo, Tina Vetreno and Tiera Wade joined presenter Danielle Modlo, who is a Certified Nurse Practitioner at Cleveland Clinic, really brought to the surface what cervical cancer patients and survivors face from a mental health and wellness perspective during and after treatment.

Joslyn Paguio, Cervivor Podcast host, lead a conversation on Sexual Health with Dr. Rosemary Basson on how we navigate our ‘new groove’ through our physical and emotional changes that cancer brings to our sexual desires.

Our last panel discussion was on Navigating a Cervical Cancer Diagnosis and Treatment Options – What’s Best for Ourselves with Ayanna Bass, Karla Chavez, Carol Lacey, Jenn Myers, Karen North, Selena Ruston and Kimberly Williams. We discussed how we make sense of everything we go through from diagnosis and beyond, and choosing the best treatment plan for you which may include clinical trials, more surgeries, or second opinions.

Just as the day began, we ended with an exhilarating bang as Dr. Cindy Trice shared her personal cervical cancer journey and how years later that journey helped create and fuel KickIt Pajamas. She truly turned her pain into purpose and we just love her company’s mantra, “Friends don’t let friends have hospital butt.” Her inspirational talk left us laughing and crying.

Last but not least, we celebrated five new Cervivor Champion Award recipients for going above and beyond with the mission of Cervivor being their driving force. Join us in congratulating these outstanding individuals as our 2023 Cervivor Champions!