Paraplegic bladder cancer survivor: ‘I wouldn’t trade my life for anyone else’s’
BY Karen Roy
May 23, 2022
Medically Reviewed | Last reviewed by an MD Anderson Cancer Center medical professional on May 23, 2022
I am a licensed clinical social worker. So, I’m a really good person to have around in a crisis. Usually, I approach those situations like, “OK. Here’s what’s going on. What do we do next?”
But my bladder cancer diagnosis last year caught me totally off guard. It definitely wasn’t anything I saw coming.
Still, I’m a glass-half-full kind of person. I always look for the silver lining. And what bladder cancer has made even clearer to me is that taking care of your mental health is just as important as taking care of your physical health. It makes the treatment process so much more pleasant.
How I’ve looked after my mental health
As a social worker myself, I’m not shy about reaching out for counseling. So, as soon as I was diagnosed, I did a few sessions with my old therapist to process my feelings.
For me, driving back and forth to Houston from my home in southern Louisiana has been the hardest part of my cancer treatment. I-10 is a narrow freeway in some places, with a lot of 18-wheelers and not much room for error. The five-hour drive can be exhausting.
One way I’ve tried to improve that trip is by bringing a different friend or family member with me each time. When I posted a note on social media about having cancer last fall, friends I hadn’t hung out with in a decade reached out to ask how they could help. Getting a cancer diagnosis was certainly not anything I would have chosen, but as a result, I’ve been able to spend more time with lots of people I love.
I’ve also tried to keep things upbeat by enjoying my trips to Houston as much as I can. I’ve now been to virtually every coffee shop between Houston and Baton Rouge, and I’ve found some really great restaurants and convenience stores along the way.
Facing a bladder cancer diagnosis
I was diagnosed with bladder cancer by chance. While I was having a kidney stone removed in October 2021, my doctor noticed a tumor on my bladder wall. He removed the growth immediately and had it biopsied. It turned out to be stage I, high-grade urothelial cancer, a type of bladder cancer.
I was shocked. Even though I have two family members who’d been treated for cancer over the years, they’d had different types. We’d also been told there was no genetic link. And, I’d had no symptoms.
Still, everyone knows MD Anderson is the best. So, there was no question as to where I would go for my treatment.
My bladder cancer treatment
Within a week of requesting an appointment, I was at MD Anderson, meeting with urologic surgeon Dr. Colin Dinney. He performed a blue-light-aided cystoscopy and transurethral resection of bladder tumor (TURBT) to make sure all the cancer had been removed and that it hadn’t spread.
After confirming my diagnosis, Dr. Dinney recommended treating the cancer with a drug called Bacillus Calmette-Guerin (BCG). It’s normally used as a vaccine against tuberculosis, but it’s also proven highly effective as a form of immunotherapy against early stage bladder cancer.
My bladder cancer treatment side effects
I show no evidence of disease right now. But my type of bladder cancer is very prone to recur, so I’ll have to keep receiving treatments until 2024. One good thing, though, is that my doctor can apply the medicine directly to where it needs to be: the previous tumor site.
He does this by inserting a catheter in my bladder once a week for three weeks. My bladder is then partially filled with BCG and it’s left inside for about two hours. After that, the BCG is drained back out, the catheter is removed, and I am free to leave the clinic. I have nine-week breaks between my treatments.
Since it’s not a systemic treatment, like chemotherapy or radiation therapy, BCG therapy doesn’t affect my whole body. Some people experience flu-like symptoms as a side effect, but I’ve only had a little fatigue, blood in my urine, and a rash on my face. I’ve actually done really well.
My life today
Right now, I’m in a really good place. My treatment seems to be working, and I’m feeling great. But I can’t deny that I’ve had my moments.
In 1987, when I was only 19, I was shot during an armed robbery. The injuries almost killed me, and they left me paralyzed from the waist down. In 2016, my husband died, leaving me with three almost-grown children. So, a bladder cancer diagnosis five years later seemed like a bit much.
Over the years, though, I’ve learned to be resilient. So, I’m not going to pre-worry. You just have to deal with life as it comes. And right now, I have three beautiful kids, a great job that I love and a really meaningful life. I wouldn’t trade it for anyone else’s.
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Topics
Bladder CancerI have three beautiful kids, a great job I love and a really meaningful life. I’m in a good place.
Karen Roy
Survivor