Lee’s Story: “I decided to fight.”

Before my diagnosis in July 2021, I was not experiencing any symptoms. It was not until I went in for my routine check-up with my cardiologist that we discovered blood in my urine. Just as concerned as I, she referred me to a urologist to follow up. Soon after, I saw the urologist, did a TURBT (trans urethral resection of bladder tumor) and found a two-millimeter tumor.

Bad news

A tumor? I was in shock. Those were words that I thought I would never hear. They scheduled me to come in to have the tumor removed and sent out for further observations. Once I received the results, that is when I learned it was cancerous and muscle invasive. Shock kicked again and had no idea what would happen next. 

I decided to fight

After receiving the news, I could tell that the doctor must have seen the look on my face and reassured me that it was not the end of the world and that it was treatable. Hearing that news helped me come to terms. I accepted it and made up my mind I was going to fight. The urologist scheduled me to see Dr. Max Kates at Johns Hopkins to review my treatment options (Dr. Kates was a 2015 John Quale Travel fellow at that year’s Think Tank meeting). The doctors determined that when they went in to remove the tumor, they could not get it all because it was muscle invasive. They were afraid they would cut through the bladder wall.

During my meeting with Dr. Kates, he went over all the options I had, and I must be honest, it was a bit overwhelming. Luckily, I found BCAN’s website and decided on what would be best for my lifestyle. I chose to have my bladder removed and get an ostomy bag. Dr. Kates told me that before the surgery, he wanted me to have four rounds of chemotherapy because he saw the best results this way. I was unaware how much of a toll it would take on my body.

I thought chemo would be easy – not so much

Going in. four cycles of chemo seemed like a piece of cake. Most people who have chemo experience hair loss, loss of appetite, and fatigue, but in addition to those symptoms, the treatments were so potent that is caused damage to my heart valve. This delayed my bladder removal surgery by eight weeks because the valve needed to be replaced. What a speed bump.

I had the surgery in March 2022 and was cleared to have my bladder removed. In May, and out of nowhere, I started having this terrible pain and bleeding. I ended up in the hospital five times because the blood clotting in my urinary tract made it difficult for me to urinate. After a prior heart surgery, I was on blood thinners which caused the tumor to bleed. Also, even with the treatments, the tumor started to grow again.

Bladder removal surgery

After the back and forth to the hospital, the surgeons re-cauterized the tumor and finally stopped the bleeding two weeks before my surgery. To my surprise, the bladder removal was relatively easy. Two days later, I was up and walking around and learning how to change and take care of my bag. I was happy that this nightmare was over and would not have to endure that pain again. Soon after being released, I adapted to my new normal quite quickly. It took some getting used to, making sure to keep an eye on it and when to drain it, but I learned a few tricks. I would put a little air in the bag; that way, when it starts to swell, I know it is time to empty it.

Life changed for the better

My journey with bladder cancer has a rocky start, but I am happy that things have changed for the better. My wife was with me when I received the news, and she was devastated. She never left my side. She went to every doctor’s appointment, chemo session and supported me through it all. Not only was my wife great, but my son was also a big help. He helped me around the house with things I could not do anymore. It drove me crazy not being able to be self-sufficient, but I was happy to have my family by my side.

Bladder cancer is not a death sentence

I want others reading this to know that bladder cancer is not a death sentence. Even though it may be hard to do, you have to think positively and have a positive attitude and a sound support system. I did not allow myself to have negative thoughts. You must continue to push through, make the decision you feel is written for you, get a second opinion, do your research and find a community.