Tale of Two Ostomies

As cervical cancer survivors, our bodies undergo very traumatic changes. Chemotherapies. Radiation therapies. Hysterectomies. Biopsies. We also live with lasting side effects that continue to wreak havoc on our bodies and emotional well-being. 

Ten months after my cervical cancer diagnosis and radical hysterectomy, I faced an unfamiliar surgery — a pelvic exenteration. At this point, I didn’t feel like I had a choice. My cancer had metastasized and this was my only option. The choice was made for me.

A pelvic exenteration is the removal of the vagina (I opted for no vaginal reconstruction), bladder, urethra, rectum and part of the colon. I was left with a colostomy (I call Ethel) and a urostomy (I call Fred).

What is an ostomy?

Colostomy = An opening in the abdominal wall in which the end of the colon is brought through the opening to form a stoma. The stoma looks like the lining of your cheek. Unlike the anus, the stoma does not have a shut-off muscle so I cannot control when I go (or the sounds that emit from my stoma – and yes, it farts).

Urostomy (Ileal conduit) = Uses a section of the bowel, surgically removed from the digestive tract and repositioned to serve as a conduit for urine from the ureters to a stoma. One end of the conduit attaches to the ureters and the other end, in my case, to the second stoma.

I have bags that attach to appliances (adhesive patches with plastic ring openings) that collect my waste. In the ostomy world, I am a ‘double bagger’.

Getting used to foreign objects attached to your body where waste pours out of is challenging to say the least. It was downright overwhelming at first. I cried every time I had to change my appliances and bags, which was every other day in the beginning. I felt helpless and angry. But as I physically healed things started getting easier and my frustration level decreased. I learned the best time for changing my bags, I learned what foods did and didn’t work with my ostomies and I learned there’s a whole online community for ostomy support and care. 

I also decided that since I was still here I wasn’t going to let my ostomies or my cancer dictate how I was going to live my life. I slowly went back to doing the things I always loved: hiking, swimming, traveling and Jazzercising. Taking back parts of my life was empowering and I felt strong again. Being able to still be me, to do the things that made me feel “normal”, helped me accept my changed body.

Most days my ostomies are unremarkable, just another body part. But I am keenly aware that my cervical cancer took away parts that gave me my womanhood and that I now redefine what it means to be a woman, a true Cervivor and someone who lives for more sunny days.

There are other women in our Cervivor community who are living and thriving with ostomies. If you are facing an ostomy surgery please know that you are not alone and that you have resources. We are here for you. 

Carol is our Lead Cervivor Ambassador and manages our Cervivor Meet Up program. She lives in Northern California where she raised two amazing kids and hikes with her husband and their fur baby Ace. Carol & Cervivor have put together a helpful guide for those undergoing ostomy surgery. Click here to view.

2019 Cervivor Champion Maria Franklin infuses her work with passion & fun

Cervical cancer survivor Maria Franklin, recipient of the 2019 Cervivor Champion Award, is BUSY – during Cervical Cancer Awareness Month, and all year long!

She embodies everything Cervivor and the “Cervivor Spark” stands for. Informed. Empowered. Alive.

She mentors other cervical cancer survivors. She hosts MeetUps. She fundraises – via social media, in her community, wherever and whenever she can. She runs the Cervivor Español Facebook group. She helped organize and co-facilitate a Spanish-language Cervivor School in Puerto Rico. She leads initiatives to help ensure that cervical cancer screening, vaccination and prevention messages reach the Latina community in the U.S., and in Central and South America.

Maria, and fellow Latina Cervivor Karla

She even used her birthday as an opportunity for education and fundraising by creating a campaign and rallying her friends to “Help celebrate my 48th birthday by joining me in walking, running or cycling a total of 48 miles during the month of October!#48MilesToEndCervicalCancer

She embodies support and advocacy. She brings her passion to everything she does. She is making her survivorship count, day in and day out. Mobilizing. Advocating. Educating.

Initially diagnosed with cervical cancer in 1999, Maria is a 20+ year survivor who started advocating for cervical cancer prevention and helping to forge a cervical cancer community of women “before there was social media” and before there was Cervivor. She has never slowed down.

Maria has a particularly busy January planned to support and harness Cervical Cancer Awareness Month in her home state of Wisconsin. She’s planned:

  • A “proclamation” from the Governor’s office to officially recognize the importance of January as Cervical Cancer Awareness Month in Wisconsin.
  • Interviews with Telemundo Wisconsin and radio stations in Puerto Rico to talk about cervical cancer awareness and prevention
  • “Teal & White Days” at work
  • A patient reception for Cervical Cancer Awareness Month, in partnership with a local  gynecologic oncology clinic
  • A Cervivor MeetUp to connect in-person with women in her community who are battling cervical cancer or dealing with the after-effects

“Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through,” says Maria.

What is your part? What are you doing over CCAM in your local community?

Let us know in the comments below. We’d love to feature you and your work on our blog, if you are interested!

Watch Maria’s powerful Cervivor Champion Award acceptance speech at the 2019 Cervivor School awards ceremony, or read her remarks below.

Maria’s Award Acceptance Speech:

I truly believe in Cervivor. I truly believe in what we do here. I know we can end cervical cancer. This is why we are here. Every single one of us has to do our part. We have to do our part so we can make this a reality for the next generation. Nobody else should have to go through what we went through.

The story is different for every single one of us. It wasn’t easy for any of us. No one else should have to go through what we went through. So we are here today to take this responsibility seriously. Because ending cervical cancer is our job. We have to do it because we have to honor what we went through, and also because of the people we have lost.

Today when you leave here [Cervivor School], you start your work and you start your mission. And if and when you’re feeling you may be a little burnt out, you reach out to one of us and we will help you. We will support you. Because we need to do this for the next generation!

Thanks, Maria, for all that you do for Cervivor, for women today and for the next generation who  – with your help – may live in a world free from cervical cancer.

Maria Franklin is a 20-year cervical cancer survivor who heads Cervivor’s Latina advocacy efforts.

Read her original Cervivor story and her blog post reflecting on 21 years post-cancer.

Watch her story and advice on Cervivor TV.