David’s Story: Never Give Up and Try to Stay Active

In 2008, I was diagnosed with bladder cancer. Before my initial diagnosis, I had just started a new job and did not have health insurance when my symptoms appeared. I eventually went to the emergency room, where I received an ultrasound and the ER doctor informed me that they found an anomaly in my bladder. I needed to have a cystoscopy, but with no health insurance, it took me some time. I was able to find a traveling doctor by the name of Dr. Joseph Mouchizadeh at the Greenbrier Urology clinic in Ronceverte, WV, who could perform the procedure. When the results came back, I was told that he found a large tumor in my bladder and I needed it removed for further observation. Now I was left with the task of finding a doctor who could perform the procedure.

I went back to the Charleston hospital where I was seen prior in the emergency room, to see if they could refer me to a surgeon. They gave me a referral for Dr. Julio Davalos, who did the tumor resection (TURBT) and my bladder removal surgery (radical cystectomy). Once the result of the tumor came back, Dr. Julio let me know that I had bladder cancer and I would need to have my bladder removed. Hearing this devastated me. My mind immediately went to a dark place. All I could think of was the worst-case scenario because many people in my family had passed away from cancer. I felt it was also my fate.

The day of my surgery arrived; I was nervous, of course. I had opted for an ostomy pouch. Once the surgery was over Dr. Julio told me I had a fifteen percent chance of survival. Wow. More bad news. I wanted to beat the odds, but I hit another roadblock.

I did pretty well after my surgery, but I noticed I started to have pain in my ribs and a big knot in my chest. I was in the hospital for ten days and I thought the pain was coming from me having to lift myself to adjust in the hospital bed. Unfortunately, that was not the reason for the pain. I went to see my oncologist, Rhajiv Khanna, at the Carl Larson Center to see where this pain was coming from. Based on his assessment, he ordered a bone scan and when the results returned, it showed that my cancer had spread to my ribs and sternum. When I looked at the bone scan, it was this big white spot in the middle of my chest, and the doctor gave me the unfortunate news that people with this type of cancer and at my stage usually do not live past a year. My best option was to start chemotherapy to increase my chances of survival. I had six cycles of treatment, and that was probably the most challenging part.

My chemotherapy treatments started in January 2009 to treat my bladder cancer and the cancer in my ribs and sternum. I had six cycles of Cisplatin, Red Devil, Carboplatin, Zometa. I had a three-month break and then I received Taxol and Carboplatin. My best friend, someone I went to college with, let me stay with he and his wife while undergoing chemotherapy. While I appreciated the help, this made it worse because they were 70 miles away and I had to get from there from my house. One day I almost did not make it while driving. I started throwing up and everything turned white—It was frightening.

When I had my first dose of Cisplatin, they had me put in the hospital for instead of the clinic just in case I had a reaction. Luckily, I did not have any problems. The following day, I could move my neck and shoulders better than when the cancer first started spreading. This was great. Then it hit me that evening and I thought to myself, “This is not so great.” I was sick for a week after the first treatment. Two or three months into the chemotherapy, things were not good. I was ill; I lost my hair and teeth; I lost weight and needed a blood transfusion. When I received the blood transfusion, I could feel myself bouncing back. Then my health was gradually improving. It took five years for me to start to feel like myself again.

I started going to an animal shelter and walking dogs for half a mile. Sometimes I would walk them for two or three miles a day. I did not have any real complications with adjusting to my ostomy pouch. Things started to look up.

As my health started to improve, I knew I had to stay active. This is one of the things I made sure I did and still do. I currently drive transports for the Humane Society. I travel to Staunton, Virginia and Pittsburgh and Morgantown at least once a week or so. I can drive for miles and miles and hours and hours and never stop to pee. I keep up on different appliances for my pouch. I just switched to new ones about a year and a half ago. These are great. I hardly ever get a leak or anything. I wear the Ostomysecrets wraps. Those are great. Once I found those, they made a big difference to my life.

If I had to give any advice to someone who is going just starting this journey, it is to do your research; I am grateful I found BCAN because reading the stories on the website helped me understand what this journey could look like. Also, you can never give up and stay active. There were times when things became too much, but I knew giving up was not an option.