Karen was diagnosed with stage 1 high-grade urothelial cancer after having kidney stones removed. Her story of strength and survival began years earlier.

An armed robbery left her a paraplegic at 19 years old. Since that tragic event, she has been in a wheelchair. Because of her paralysis, she needs to catheterize five times a day to empty her bladder, which eventually led to recurrent UTIs.

A cluster of kidney stones led her to the hospital. When the lithotripsy failed, the doctor put in a scope and saw the tumor.

She shares how she managed her mental health, learned to self-advocate and find a community for support.

I met my husband in grad school. He was getting his engineering degree. I had a nine-month-old when I started grad school. Then I became a licensed clinical social worker [and] worked in hospitals for 20 years.

I now work for a company called Numotion. We’re the largest supplier of custom wheelchairs. I still sort of use my social work degree trying to help people with disabilities.

I do a podcast: Life Possible with a Disability. It’s mostly for people with mobility impairments.

I do a lot of social media. Part of my job is social media for people with mobility impairment disabilities. It’s LifePossibleKR on Instagram and Facebook. It’s not just education and super strictly professional. You get to see glimpses into my life.

I let a lot of my personal life bleed over into those channels — maybe more than I should — because I want people to see that life with a disability or with a cancer diagnosis can still be such a beautiful thing.

I think that’s what you do with [a] tragedy. It’s the best way to handle it. And my cancer diagnosis as well. You can’t stop tragic things from happening, but you can definitely use them for good.

The lithotripsy failed. He said, “We’re going to have to go in in a few months and put a scope. I’m going to have to go in with a tool, cut these stones, and pull them out. I don’t want what happened last time to happen again where it obstructs and you could go septic.”

I was having a lot of UTIs. But when you [do] intermittent catheterizing, you kind of do so that was not a big, major warning sign. I didn’t have blood or anything yet.

He went in with that camera to remove the kidney stone and when he did, he saw the tumor. It was a high-grade urothelial cancer that he caught early. Stage 1.

I was lucky that it was not yet in the muscle and I don’t think they normally catch them on stage 1 because you can’t tell. You have to go into the bladder and look. Urine prevents from lighting up a tumor so unless you’re in there looking, you’re not going to see it.

Treatment

I started doing my research right away. Being a social worker, I found [the] Bladder Cancer Advocacy Network. They have a podcast called Bladder Cancer Matters. I learned a ton from them and decided to start [treatment].

I love my doctor here, but MD Anderson had blue light cystoscopy and some other avenues if the BCG failed. For this type of cancer, BCG is immunotherapy. It’s actually the tuberculosis vaccine and it’s the most effective treatment.

There’s a shortage [and] I was afraid that I might not be able to get it in Baton Rouge so I started going to MD Anderson for the beginning part of treatment.

There’s still a shortage, but I haven’t had any trouble getting it. [At] MD Anderson, they were actually splitting doses though because the data was showing that a smaller amount was almost exactly the same efficacy. You had to wait for two other patients to split a dose.

It was very difficult driving back and forth to MD Anderson. And honestly, my doctor and I weren’t really seeing eye to eye.

I wanted to speak with him. I’m like, “If this is true and we biopsy today or tomorrow and find out that it is a squamous cell change, what are the next steps?” He basically said, “You’ll need to have your bladder removed.”

Advocating for yourself is doing tons of research on your own. I was like, “From what I’ve read, that’s not the next step. There could be other next steps.”

I’m young. I was 53 at the time. I was like, “I’m not ready to have organs ripped out.” I didn’t drive all the way here for that.

He said, “There are two other patients of mine that didn’t have their bladder removed when I recommended it. I gave them a certain chemo and they’re both dead.” And I was like, “From chemo?” And he’s like, “Yeah.”

Then at some point, I was like, “What does bladder removal look like?” He’s like, “You’ll have to cath.” Heads up: I’ve been cathing for 35 years and if you didn’t read my chart… He didn’t want to come in to talk to me at all. But since he didn’t look at my chart, I was already kind of done with him.

The biopsy was scheduled. We had the biopsy. It was a false positive, so yay me. But I never went back to MD Anderson after that.

What treatment did you undergo?

I’ve been going through BCG. I’m still going through BCG. I was diagnosed in October 2021. Made a year clear. We had that one scare, but it was a false positive.

I’m [at] the point where every six months, I get scoped and then I get another round of treatment. It’s a three-year thing with no gaps, but I got COVID. You can’t go when you have COVID. I didn’t have bad COVID and I was like, “Can I just hurry up and get treatment?” But you can’t.

I’ve got another scope coming up and another round of treatment, but I feel like it’s mostly in the rearview mirror. A few years but every six months, so it’s not nearly as disruptive.

The first round was six weeks in a row. I went to Houston every week for six weeks. Then you wait three months and you got treatment once a week for three weeks.

I work full time and I’ve got a lot of responsibility. I have three kids in their 20s. I’ve been a single mom for a long time, too, so every six months is like cake compared to what we’ve been through.

I go down the street and I get a full dose. They’re not splitting the dose here, which is nice.

I had met my now fiancé in June before the October diagnosis and we were in a long-distance relationship. He lives in Arlington, Tennessee, and I’m in Baton Rouge. We incorporated MD Anderson into our dating life. It’s not the most [ideal], but I didn’t want to not see him or not see my friends.

Now, I can look back and say you see how many people really love you that you don’t slow down normally to appreciate.

It’s a financial burden, especially if you’re trying to travel out of state for treatment.

I reached out to the MD Anderson social worker. They have all the resources. I found out there were programs that helped with hotel and/or mileage. But it does get expensive, especially if you’re missing some work.

My work [was] amazing. If I travel during the week for treatment, I could work at night [or] on the weekends. They were great.

Find a mentor. Find physicians [with] that specialty.

Ask a bunch of questions. I wanted to know the most effective course of treatment according to the data. I also wanted to know if this fails, then what’s next? What other options exist? And that obviously served me well down the road.

Who are the best physicians in the country? Can I get there? Can I afford to? Where could I stay to get a second opinion?

It was made very clear to me through the Bladder Cancer Advocacy Network that a good doctor is never offended by a second or third opinion.

When your tribe reaches out to help you, they want to help.

Resources to help with the financial burden of cancer

Social workers are the plethora of information. If they don’t have it, they will find it. I just reached out. That’s how I found everything that was available and where.

There are programs out there but no one’s going to present you with the welcome packet that says, “Here are all the things we have to offer.” It takes a little digging.

Whatever your particular diagnosis is, a lot of them have nonprofit organizations that have resources. If it’s a financial burden, you need to reach out to the facility and to your advocacy network.

Staying positive

So much of being diagnosed and hearing that you have cancer is such a mental strain. Your brain goes to the worst places. Stay really positive throughout the whole thing. Sounds very cliché, I know.

A lot of how a diagnosis of any sort impacts you, you get to frame it however you choose. It takes a minute because you can die. That’s the first thing you think of. “I could die.”

There’s a lot of data to show the connection between a positive mental attitude and a good outcome. It’s not the cure-all, but it sure doesn’t hurt.

I am just bound and determined not to let life get me down. But, obviously, my fiancé, my children, my mom, and my friends, knowing that you’re really loved and appreciated. 

A sense of humor. That was really important. That helps.

I’m not saying it’s easy. When I got shot, I said, “This is not fair. I’m a good girl.” I was a rule follower, scared to death of my parents, and just a good kid. My father said that fair was for games like Monopoly and that he never told me life was going to be fair. I was like, “Okay, well, that sucks.”

But it does put it in perspective, right? Bad things are going to happen and all you can do is really make the best of it.