How I coped with my emotions during bladder cancer treatment

After I was diagnosed with stage IV bladder cancer in September 2014, I experienced many of the stages of grief.

My doctor initially thought I was suffering from prostatitis. But the biopsy results from a tissue sample taken from my groin area came back positive for bladder cancer. To say I was in shock is an understatement. I was in disbelief. I never really drank or smoked, so I couldn’t really understand why this was happening to me.

I finished four rounds of chemotherapy near my home in Wisconsin only to get more bad news: not only were the treatments unsuccessful, but my cancer had spread to several lymph nodes in different parts of my body. As a result, the bladder removal surgery I was scheduled to undergo was no longer a viable option.

Then my local oncologist called and said, “How do you feel about going to Texas? They’re doing this new immunotherapy thing down there -- you should check it out.” My wife and I hadn’t heard of MD Anderson before, but an internet search convinced us that we were heading to the right place.

An immunotherapy clinical trial put my bladder cancer in remission

During our first appointment, Dr. Jennifer Wang laid out several treatment options for me. Because I’d already experienced disappointing results with one standard treatment protocol, I was convinced that immunotherapy was my only hope. I decided to enroll in a Phase I/II clinical trial for examining the effectiveness of taking the immunotherapy drug nivolumab by itself versus combining it with an immunotherapy drug called ipilimumab. I was selected to undergo the combination.

After my first treatment, I experienced some pain near my groin area, but it lasted less than a day. A few days later, I felt great, and eventually, I couldn’t even feel my enlarged lymph nodes any more.

But a few days after my second infusion, I ended up in a Wisconsin hospital for enteritis, or inflammation of the small intestines. Because immunotherapy was so new, the emergency room staff didn’t know how to approach my treatment. Thankfully, my MD Anderson team helped coordinate my care.

When I returned to MD Anderson for my 60-day follow-up with Dr. Wang, my PET scans showed no evidence of disease. Though I had planned to remain on the clinical trial, I had to stop treatment when I developed colitis, or inflammation in my colon, after my third infusion.

Finding joy in every day

When I found out I had no evidence of disease, I experienced many of the same emotions I’d felt at the time of my diagnosis. Cancer treatment had become such a major part of my life, and it was difficult to believe that suddenly everything was good again. I was also scared that my cancer would return. Ultimately, I found comfort in Dr. Wang’s expertise.

Even after three years of clean scans, I still occasionally struggle with a fear of recurrence. I’m not certain I’ll ever get over it, but I’ve begun to cope with my fear and grief by learning to enjoy the present moment.

Before cancer, I was like many people – looking forward to the weekend to live my life. Not anymore. Now, I find joy in every day, and I spend as much time as possible with my 6-year-old daughter and wife.

I also stopped putting off things I’ve always wanted to do. My family was baffled by my decision to buy a boat while I was in treatment, but doing so has helped me live a fuller life and make up for the father-daughter activities that cancer took away from me.

My advice

I know it’s hard to envision a life after cancer when you’re in the midst of treatment. That’s why it’s so important to connect with other survivors.

I’m forever grateful to the nurse who shared her breast cancer story with me. As her doctor had told her, “I’m going to need a year of your life, but then I’m going to give you the rest of your life.” That was all I needed to hear to stay motivated, and I hope that it empowers you to stay on course, too. So hold on, and soon enough, you’ll find yourself on the other side of cancer treatment. 

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