The most authentic responses often come from the mouths of babes, even if said babes are teenagers.
About a year after I completed treatment, I was asked to help during a wrestling tournament at my high school. In my pre-cancer life, I was basically a team mom for every sport. I had a soft spot for my wrestlers, partially because most of their families never attended the meets and weren’t supportive of their student-athletes.
As I was sitting on the sidelines while scores were being calculated, one of our recent graduates who had wrestled sat next to me. After the usual pleasantries, he asked if he could ask me about my cancer.
I had been very open about my diagnosis and everything I had been going through, so I obliged.
We went through the basics—the symptoms, how and when I got diagnosed, etc. Twix was only 19 or 20 and thinks of me as a mother figure, so he was genuinely interested and concerned about my well-being, so we continued.
When we got to the treatment part, I generally stated that I had surgery and then chemotherapy. He wanted to know more about the surgery, so I gave my usual spiel.
“Due to the tumor involvement, I had my bladder, ovaries, fallopian tubes, uterus, pelvic lymph nodes, and part of my cervix removed. Then, they took a piece of my intestines to reroute the plumbing from my kidneys to a medically made hole in my abdomen, so I can expel urine into a medical appliance called an ostomy.”
Twix was shaking his head and taking it all in. Gradually, I saw the lightbulb come on, and the confusion and bewilderment set in.
“B . . . b . . . but Ms. Liz . . . you . . . you . . . you can’t LIVE without a BLADDER!”
“Um, yes, you can, Twix! I’m alive right now, and I don’t have a bladder!”
Still confused, I explained it to him again, this time step by step.
I could tell he was starting to get it, but he wasn’t quite there.
“What’s the thing called again?” he asked.
“I have a urostomy, it’s a pouch to collect urine.”
“Can I see it?”
I showed it to him. It was back in the days before I started using ostomy covers, so it was just my clear ostomy pouch from Hollister. He could see my rosy red stoma at the top in the center; per usual, my pouch had a bit of mucus and urine.
Obviously, there were questions. I answered them all.
He asked if he could touch it. I allowed him to gently feel the area around my stoma with my pouch still in place. A small amount of urine squirted out of my stoma, which he saw, and sort of jumped a little as he wasn’t expecting it.
“WHOA! That’s crazy! Didn’t you feel that?!”
“Nope! I don’t feel anything now. All those gotta go feelings are in your bladder. Since I don’t have a bladder, I don’t feel anything when I urinate. When my kidneys are done processing the urine, they spit it out into my pouch.”
“Cool! That’s baller! I mean, you know it’s kind of crazy and weird, but it’s baller too.”
After a bit more conversation about what I had experienced and what he had been up to since graduation, we got on with the rest of the tournament.
The thing is, there is absolutely no reason to hide what we’ve gone through. No reason to hide our scares, medical aides, medical appliances, or the psychosocial experiences we have encountered because of our diagnosis. No reason whatsoever.
Stigmas and stereotypes only thrive when we remain silent. They are broken when they are discussed and brought into normal conversations. Since I didn’t, and I don’t, make a big deal about having an ostomy, none of the people in my life have made a big deal about it or viewed it negatively.
Living through bladder cancer and knowing I will have to wear a medical appliance for the rest of my life brings challenges. There is no doubt about that. However, there is nothing to be ashamed of. There is absolutely nothing to hide.
I view my scars and ostomy as symbols of my survival. My survivorship. They are badges of honor and valor that prove I kicked cancer’s ass.
Living with a medical appliance or using medical aides is no different than a person with diabetes who wears a glucometer or a cardiac patient who lives with a pacemaker in their chest.
That’s not to say that getting to the point of openness, honesty, and even pride isn’t a process. It most definitely is!
Through my experiences since being diagnosed, I have been involved in various cancer and ostomy communities. Being involved in the ostomy community has allowed me to become close with many Wound, Ostomy, and Continence Nurses (WOCNs). The single most helpful piece of advice that has echoed throughout all their wisdom is: You must take time to grieve the body you lost.
I’ll say that again—You must take time to grieve the body you lost.
Grieve the strength, organs, abilities, or whatever else has physically affected your body throughout your cancer experience.
Grieving these pieces of yourself opens you up to acceptance and healing. It allows you the space and opportunity to grow into thriving once again.
I don’t know about any of you, but I refuse to give in. I will strive to thrive as long as I have breath in my lungs.
I will strive to have every new person who crosses my path have that very same feeling Twix had learning about what my body had been through. Instead of feeling pity or expressing their sorrow, I want people to look at my resiliency and adaptations as “Cool! That’s baller!”