myCancerConnection gave me hope before my total pelvic exenteration
The first time I heard the term “total pelvic exenteration” in January 2016, I thought my local doctors were crazy. I’d been in treatment for cervical cancer off and on since early 2012, but my latest recurrence was so small, it didn’t even show up on scans. We only knew it was there because every time I had another Pap test, the results came back positive for cervical cancer.
I’d already had chemotherapy, radiation, brachytherapy and a hysterectomy near my home in southern Louisiana. But this procedure was way more “radical” than even the radical hysterectomy. That had only involved the removal of my uterus, ovaries and fallopian tubes. This would require the removal of my bladder, rectum and vaginal cavity, too.
If I did this, I’d have to wear bags outside my body to collect stool and urine. I couldn’t even imagine that. I was only 41 at the time. My daughters were 9 and 4. How was I ever going to do it? And how on Earth would I camouflage it? Was I going to be wearing muumuus for the rest of my life?
Fortunately, I sought a second opinion at MD Anderson. And during my very first visit there, Dr. Pedro Ramirez asked if I’d like to speak with someone who’d already had the procedure done. I told him yes. That turned out to be one of the best decisions I ever made.
MyCancerConnection connected me with other total pelvic exenteration survivors
In the video, Kara and two other women who’d had total pelvic exenterations talked about what their lives were like after the procedure. I couldn’t get over how normal they all looked. They weren’t bedridden or in wheelchairs. They were just sitting there wearing normal clothes, living regular lives.
As I listened to their stories, I remember thinking, “I can do this.” I just needed to see someone else who’d made it through, so I’d have enough faith that I could get to the other side, too.
Practical support from people who’ve been there
I was really excited to be matched up with Kara. I felt like I knew her already from the video. What I was not expecting was the depth and quality of support she provided.
The first time she called me, we spent four hours talking on the phone. She lives in Houston, so she offered to come meet with me in person, too, when I was at the hospital for one of my pre-op visits. We sat together in one of the lobbies there and talked for another three hours. Then she took me into one of the restrooms to show me how her ostomy system worked and what it actually looked like. It was an incredibly brave gesture and a very kind thing to do. It was also extremely reassuring.
Finding answers to my pelvic exenteration questions
With Kara, I was able to ask questions like, “What happens when my kids run up and hug me hard unexpectedly? Is a bag going to burst?” I asked her a lot of other questions that were even more personal. She answered them all, without hesitation.
And, on the rare occasion when she couldn’t answer one of my questions — because we’d run into something she’d never experienced personally — she showed me how to tap into other resources, such as support groups, until we found a solution that worked for me. Dr. Ramirez may have saved my life physically, but I feel like Kara saved me emotionally. If it hadn’t been for Kara and myCancerConnection, I don’t know how I would’ve managed.
Why I became a volunteer with myCancerConnection
I was so grateful for Kara’s support that I didn’t hesitate to become a volunteer with myCancerConnection myself. I signed up as soon as I could, around mid-2017. Since then, I’ve talked to five or six people.
On the one hand, I feel kind of sad every time I get a new email telling me I’ve been matched with someone, because it means another person has been diagnosed with cancer and needs to have this procedure done.
But on the other hand, I’m glad to have something to contribute. If I can ease just one person’s mind and let them know life can be relatively normal after this, then I want to do it.
Get connected with a cancer patient or caregiver through myCancerConnection by calling 1-800-345-6324.