Making the most of life after a total pelvic exenteration

On April 3, 2007, I had a surgical procedure at MD Anderson called a total pelvic exenteration. During the procedure, Dr. Michael Bevers removed my vagina, bladder, anus and rectum. Then, he made an artificial vagina using two of my abdominal muscles, and an artificial bladder (known as an “Indiana pouch”) out of part of my ascending colon and small intestine. He also created a stoma (or surgical opening in the abdomen) for use with a colostomy bag, which collects stool outside the body.

That surgery might sound pretty radical. But when Dr. Bevers suggested it, I didn’t hesitate. Due to a recurrence of uterine fibroids, I’d already had a total hysterectomy. That’s when my surgeon discovered I also had cervical cancer. I had six rounds of chemotherapy and 28 rounds of radiation therapy to treat it. Only 13 months later, the cancer was back. I was only 42 at the time, and I wanted to give myself the best possible chance of survival. So, I decided to go for it.

In retrospect, I had no idea what was in store. Even after looking into it, I didn’t really have any concept of what life would be like afterwards. And you can’t know, unless you’ve actually experienced it. But I’ve always been a positive person. So, that’s the way I’ve tried to look at this. The total pelvic exenteration was just part of my path. And I was going to make the best of it.

Life after my total pelvic exenteration

The first four years after my total pelvic exenteration were the hardest, because I kept getting urinary tract infections and “pouch” stones (like kidney stones, only in the artificial bladder). Since that part of my anatomy wasn’t normal anymore, neither were my symptoms. Instead of feeling a burning sensation or seeing blood when I urinated, I’d just wake up one morning with really bad nausea, a high fever or excruciating flank pain. I must have made more than 20 visits to the ER during that time, including one to have my gall bladder removed.

Fortunately, everything’s functioning the way it’s supposed to now, and I haven’t stayed overnight at a hospital in two years for anything cancer-related. I’ve also shown no evidence of disease since the surgery. Generally, the five-year mark is considered a big deal when it comes to survival rates after cancer diagnoses, so celebrating my 12-year anniversary of being cancer-free is pretty amazing.

Why I volunteer with myCancerConnection

Life after a total pelvic exenteration is not easy. Even holding yourself upright is harder, because you lose a lot of core strength from having so much tissue removed. And everything in your abdominal cavity and pelvis has been manipulated, so sitting on a hard surface isn’t very comfortable. (One thing you don’t realize until later is how much cushion the anus and rectum give your bottom.)

I try to help as many other people who’ve had a total pelvic exenteration as I can, whether it’s through various  support groups or myCancerConnection, MD Anderson’s one-on-one cancer support community.

For most ladies, I think the biggest challenge is body image. I’ve been on a cruise since my total pelvic exenteration, but some women never even go swimming, because they’re so self-conscious about showing a bag or a scar. But I encourage women not to let cancer limit their lives. Life is not over just because we’ve had this procedure. And it’s not always going to be perfect. But it’s up to us to make the best of it.

Making the most of my time

I’ve tried to make the most of my time. Working full-time was not something I could really do right after the surgery, so I went back to school part-time and have almost finished a degree in fine arts. I also pushed myself to travel, served as an ostomy support group leader and have even volunteered as a park ranger in Yellowstone for the past five summers.

It’s still challenging to walk and stand for long periods, and hiking takes me a lot longer than the average person. Sometimes I have to stay in bed all day afterward just to recover.

But it’s amazing to think about what anatomy is and how it can be manipulated to work with what we have now versus what we’re born with. My total pelvic exenteration forced me to be creative and think outside the box in some areas. But I have no regrets. I try to make the most of what I’ve been given and not dwell on what I haven’t. Because every single bad day is better than no day at all.

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