Kim’s Story: “Life doesn’t stop when you have cancer.”

In October of 2024, I earned my PhD. I had plans to become a professor, maybe even retire early. And then, on a random snow day just three months later, I was diagnosed with bladder cancer.

At first, I had no physical symptoms at all. I was cooking dinner, went to use the restroom, and realized I couldn’t. It didn’t make sense.

The rest of the evening was a blur. As things got worse, I went to my primary care physician, who was just as concerned as I was. She sent me straight to the emergency room, where a CAT scan led to the diagnosis.

In just a few hours, my life changed forever.

Searching for Answers

That evening, they performed a TURBT and told me and my husband that the muscle might be involved. Even though they told us it wasn’t good news, we had no idea what “muscle invasive” actually meant. Back then, I couldn’t tell you what a “TURBT” was or pronounce words like “cystoscopy.” So, I turned to the internet and found BCAN’s podcast.

We burned through episode after episode. It was informative, it was real, it was personal, it was emotional. I was able to learn about all the facets of bladder cancer from a single reliable voice, and I could do it on my commute to work.

As we continued our research over the next few months, we came to the conclusion that bladder removal (a radical cystectomy) was the best path forward. After undergoing chemotherapy, we moved into June thinking we were going to remove the bladder, wash our hands of cancer, and move on with our lives.

Choosing the Indiana Pouch

It wasn’t easy from there. I was in the hospital for the next few holidays: July 4^th, Labor Day, even my birthday. I had fistulas, I had infections; I was just not recovering well.

When it came time to choose a urinary diversion, we looked into all of our options. The neobladder, the ileal conduit—our priority was finding the best life-preserving option. However, we didn’t come across much information about the Indiana pouch. When my urologist explained that it meant the stoma would go through my belly button, I felt relief beyond measure to find an option that didn’t involve a bag outside my body.

I had a radical cystectomy and got my Indiana pouch in a surgery that lasted over 12 hours. Afterward, despite all the research we had done, we were not prepared for the kind of care involved when we got home.

Healing on Two Fronts

There were two major aspects to my recovery: the psychosocial and the physical.

I’m a school psychologist, so the psychosocial piece was very important to me. Indiana pouches are not a common urinary diversion, so I relied heavily on my support group during my recovery—in fact, they were my first call when I got home from my surgery. But aside from that, my friends and family showed up for me in ways I never thought possible. Life doesn’t stop when you have cancer; people still have to fold laundry, make dinner, go to work. It feels unrealistic to expect people to take time out of their busy lives to be there for you, but they did. Especially my husband; I couldn’t have done any of this without him.

The physical part of my journey, however, was overwhelming in a way I hadn’t imagined.

I’m an active person; I played tennis and pickleball, and I was taking dance lessons for my daughter’s wedding that November. I didn’t expect something as simple as taking a walk around the block to be difficult, but it was. I had to push myself to go for walks, which my friends would join me for.

Then, when you’re starting to feel better, you think that you’ll wake up, put on your same clothes, and walk out the door like nothing has changed. But the other aspect of my physical recovery was coming to terms with how my appearance had changed. I used to have long, blonde hair and now, I have short, salt-and-pepper hair. I’m not a vain person, but it’s jarring to look in the mirror and not recognize yourself.

You have to learn to get used to your new body. You have to accept that your new body doesn’t look or act the way your old one used to, and until you do, taking steps forward is hard.

However, once you come to terms with this and start designing your life around the physical limitations that you now have, you can find happiness and joy.

In the past two months, I’ve finally started feeling like myself again. It’s been a long journey, and it’s not over, but the missing pieces of myself are slowly coming back to where they need to be.