Timothy’s Story: “I knew if I stood up at that moment, I was going to pass out”

“You have bladder cancer” are the words Timothy Powell never expected to hear. Throughout his career as an internal medicine physician and pediatrician, he devoted himself to caring for patients and assisting them in coping with their diagnoses. He never imagined that he would be on the receiving end of such news. Despite the toll his bladder cancer journey has taken on his mental and physical health, Timothy sees it as an opportunity to gain a fresh perspective on life:

“Right now is all we have. We aren’t guaranteed tomorrow, but today is really wonderful and I really enjoy being in today.”

It was June of 2021 when I started to notice that my urine was dark yellow. Initially, I thought maybe I wasn’t drinking enough water. But then, I also started having intermittent pain with urination.

I’m a pediatrician and an adult internal medicine physician; we learned in medical school that bladder cancer was typically associated with painless hematuria, so I didn’t connect that this pain and slightly darker urine were possible bladder cancer symptoms. About two weeks in, I began to notice that there was some blood in my urine. I immediately called a urologist and was very fortunate to get in within a few days.

I had a cystoscopy in mid-July and there it was, bladder cancer.

I felt overwhelmed. I was sitting down in my doctor’s office, and I remember the urologist saying, “Come out and we’ll make your appointment for surgery.” But I knew if I stood up at that moment, I was going to pass out.

I wasn’t too familiar with bladder cancer. I had had patients who’d had bladder cancer but really didn’t know a whole lot about treatment.

Following the cystoscopy, I had a TURBT, and from that, the official diagnosis of high-grade T1 non-muscle invasive bladder cancer was made. Subsequently, between my first and second TURBTs, I went for a second opinion at MD Anderson in Houston.

About six weeks later, I had a second TURBT and everything was clear. So, a couple of weeks later, I started BCG treatments.

When I was diagnosed with bladder cancer, it really came as a big shock to me because I didn’t feel like I had a lot of the risk factors. I wasn’t a smoker. I put a lot of importance on my health. I’m a runner. I generally take really good care of myself. It just felt like the rug had kind of been pulled out from under me. I really started to have a lot of anxiety and that led to some depression as well. In that first month, I lost around 10 pounds because I was so stressed with everything. My whole world felt like it was turning upside down. I thought to myself, “Well, what’s this going to mean? How much of my life will I lose?”

By the time I began BCG, I had started on anxiety medication and felt a lot more stable emotionally. I found it really important to have a long-term plan for my BCG treatments. I wanted everything to be by the book even though my urologist suggested that it didn’t have to be that rigorous and suggested that I could take a slightly more relaxed course on things.

I had the first six-week course of BCG. Typically, I had a couple of days of painful urination after the treatments, but nothing too bad. I think for me, one of the things I really disliked about it was just feeling particularly vulnerable and being exposed as the nurses were doing the catheterization. That led me to ask if I could do the treatments myself, as in put in the catheter and do the installation myself. The nurses said, “Yeah, we can show you how to do that.”

By the third treatment, I was doing it myself and it made things a whole lot more comfortable for me.  I had spoken to my urologist about it and he said, “We’ve never had anybody ask us if they could do that before, but if that’s what it would take to make you feel comfortable with this, then we’re willing to do that.” It meant a lot to me that my urologist’s office let me administer the treatments myself. My wife is a nurse, and she was there to help me as well.

After getting through those first six weeks, I had another cystoscopy. Again, everything was clear. I then started on maintenance BCG. Every 3 months, I would have BCG, which would be done each week for three weeks, and then there would be a break in between.

That all went fine until my 12th BCG treatment. After that one, I started having this painful urination that just didn’t quit. In addition to that, I started having pain with ejaculation, and I really started to think, “This is not like all the other treatments that I’ve had so far.”

My urologist said to give it some time and it should calm down. About a month and a half later, I had another cystoscopy that showed some inflammation in my bladder and urethra, especially the prostatic urethra, that goes through the prostate.

Things became progressively uncomfortable, and I started wondering if I might have an infection from the BCG. The interesting thing is it’s very hard to prove if you have a prostate infection from BCG, but the more that I read about it, and the more that I talked to my urologist, as well as getting a second opinion from another urologist at Duke and an infectious disease specialist, they all agreed that they believed I had BCG prostatitis.

That went on for about three months before I was able to receive treatment for BCG prostatitis, which included three different antibiotics. In my case, I was on ciprofloxacin, isoniazid, and rifampin. The original plan was to do a three-month course. About three weeks into treatment, all my symptoms went away. We had tried to prove that it was an actual prostate infection by doing an MRI of my prostate, as well as some urine cultures, and nothing ended up proving that it was prostatitis other than the fact that I got well after the medication.

At that point, my urologist said, “I really think that you had an infection. I would not recommend doing BCG anymore.” At that point, it had been over a year with surveillance, and I had not had a recurrence. My doctor and I agreed that I would continue follow-up cystoscopies and intermittent CxBladder screenings (a urine molecular test for bladder cancer).

Still, bladder cancer was on my mind every day. I questioned if it was going to come back or if I was choosing the right therapy. Especially when I decided to stop BCG, I thought to myself, “Was that the right choice?”

Fortunately, I was off work for a little bit after the initial TURBT. I have a not too physically strenuous job, so I was able to work most of the time. But it gave me a lot more empathy for my patients who were going through new diagnoses. Even something like diabetes impacts somebody’s life forever, and it gave me a new appreciation and understanding of life.

At first, I was reluctant to tell people at work. I’ve been a pretty private individual. I just didn’t want people to feel sorry for me. And yet, I started having a few good friends at work who would ask, “What’s going on with you? You’ve been out a lot this last month.” So then I started telling people, and the support just kind of flooded in and I thought, “Wow, why didn’t I tell people before?”

While Googling, I learned about BCAN. It was amazing. I was connected with someone who had had bladder cancer in the Survivor to Survivor program, and they walked me through what they went through.  That was really helpful.

I also learned about the Inspire App and website and have been able to ask questions in the community about what people have been through and understand their experiences.

I’ve also been trying to, through my urologist’s office, offer support and mentoring to other people who have or are going through bladder cancer. I was reading a lot of medical literature and realized many people end up losing their bladders with this disease. It was a big fear of mine.

Regardless of all the fear factors associated with bladder cancer, it’s important to reach out to people and not hide. For me, being able to have that support from family and friends made a huge difference. Talk with somebody else who’s been through what you’re going through and recognize that you’re not alone in this journey.

If present me could have a conversation with newly diagnosed me from a few years back, I would tell myself to relax a little bit, it’s going to be okay, and I’m going to get through this. I had people around me who cared about me, who helped me through things, and I had a God who cared about me and helped me.

You’re going to discover so much about yourself that you didn’t know, and that’s going to be amazing. I think that’s one of the huge blessings that has come out of this for me, is just discovering who I really am, and I’m really coming to like that person.

Right now is all we have. We aren’t guaranteed tomorrow, but today is really wonderful and I really enjoy being in today.