Mechele Leon, an associate professor of theatre at the University of Kansas in Lawrence, was diagnosed with bladder cancer in March 2016. After treatment, Leon was left with no bladder, a urostomy bag, and a story to tell — which became a one-woman play called Bladder Interrupted.
Why did you turn your experience into a play?
Writing blogs did not reflect my story. I experienced it through the ways people behaved towards me, and the way I felt about things that happened. I always kept my sense of humour and would text people from the emergency room and joke about what I was seeing. The show was an adventure discovering what my voice might be in a situation like this.
What did you learn from the research you did after your diagnosis?
I did a lot of reading, and with each fact I was more appalled. I would have a moment where I'd learned something new — like, oh by the way, they have to take out part of the vagina when they do surgery — and I practically fell out of my chair. I learned how poorly bladder cancer is funded and researched. By the time I walked into my doctor's office, I'd had weeks to worry about it. I would have been better off just getting the story from my doctor.
You say the play helped you figure out who you are with cancer. Did you have any epiphanies?
It was like the moment in the Mel Brooks film Young Frankenstein where a woman takes a candle off a bookshelf, causing the bookshelf to spin around, trapping Gene Wilder on the other side, and he yells, “Put the candle back!” I wanted to scream that, but I am on the other side and you can't put the candle back. Cancer makes it clear you're not going to live forever. Life is shorter than you think and it scares you.
What has been the response to the play?
One night my surgeon came with his family and the stoma nurses from the University of Kansas Hospital. They said that it was fantastic to hear a patient's story. My oncologist and his family also came. I think they were surprised by the creative treatment of this disease. I knew the show was funny and educational, but I didn't know how people would feel about listening to it. I have since been invited to join a patient-advocate programme from the University of Kansas Cancer Center called PIVOT (Patient and Investigator Voices Organizing Together). I will be a part of teams that inform doctors about patient experiences in a way that might help guide research priorities.
In the play, you rebel against the idea of a cancer patient being a warrior. Why?
It sets some cancer patients apart from others and gives us a misleading sense of responsibility for our recovery — that because you have a positive outlook and others don't, you will do better. I have seen the deaths of two of my best friends who were both fighters. I believe in fighting and in the desire to live, but if cancer gets you, it gets you.
Why did you decide to have your bladder removed instead of trying to save it?
Chemotherapy and radiation can sometimes save your bladder. But the fact that I had a very aggressive form of the cancer clinched it for me. The percentages didn't look good on any other procedure than the radical cystectomy. I wasn't going to gamble with my life.
The play doesn't deal much with the physical aspects of losing your bladder. Why not?
I don't have an issue with having a urostomy bag. I'm more concerned about the health repercussions. I have a direct line from my kidneys to outside my body, and if urine backwashes into the kidneys it can cause infections. It's important to keep the kidneys healthy because they're all I have now.
Why did you decide to have an '-ostomy' rather than other available options?
You've got to pick a system you can live with for the rest of your life. They can take your intestines and rebuild a urinary reservoir inside your body, but the continence isn't guaranteed and the 'neobladder' can get infected. With an -ostomy I can go hiking and swimming and don't have to worry about leaking. The big picture is: what is going to give you the most normal life? I refuse to go crazy about a dumb bag. And there are some perks. I can empty it when I'm hiking — and I don't have to squat.
This interview has been edited for length and clarity.
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Interview by Tammy Worth