Tell us about your husband’s journey.
My husband, Jerry, was asymptomatic. One day, his urine looked like pure blood. And was bright red. At the time, we thought it might be a bad kidney infection. The doctors ran tests, a CT scan. They told him he had a spot on his bladder.
We made an appointment to see a urologist and he took a look inside Jerry’s bladder with a cystoscope in October of 2017. They took a biopsy of the tumor and discovered that it had invaded muscle wall of Jerry’s bladder.
Jerry started adjuvant chemotherapy before the surgery to remove his bladder. He had a tough time with the chemo. He did not feel well, and his blood levels were not good. They gave him iron injections and then four or five rounds of chemo. He was so sick. Jerry could not eat because he said that everything tasted like cardboard.
They performed the surgery to remove Jerry’s bladder in May of 2018. We were relieved to find out that the surgeon said he got it all – and there was more than one tumor. Jerry had a urostomy and the doctor thought that he was doing fine. That was not the case. Between May 5 and August 15, Jerry had many complications. It was frustrating, but the doctor said, “he should not be like he is.” The doctor then did another scan and found no tumors. But Jerry continued to worsen.
My husband had always been the strong type. When they removed his bladder, he weighed 200 pounds. His cancer had spread everywhere in his body. When he died, he weighed 140 pounds.
Jerry was a great guy. He was a hard worker and very polite. That was his personality. He did not want anyone to feel sorry for him or wait on him. Jerry and I were married for 48 years and we were like little kids who doted on each other. We took care of each other because that was just what we did. I would have done anything for my husband.
While Jerry was sick and after he died, I was frustrated, angry and wanted to know what had caused his bladder cancer. I tried to figure out if he had been exposed while he was in the Army during Vietnam, but he was stationed in Thailand, not Vietnam, so it could not have been Agent Orange.
Finally, it dawned on me: Jerry was a volunteer firefighter for nearly 40 years. He started when he was 16 and retired from firefighting when he was 55. When he started volunteering, there was not special gear like they have today. He came into contact with so many hazardous chemicals while fighting fires. I am convinced that it was this that caused his cancer. To clean their turnout gear, they would take them to the laundromat, not the specialized machines that they have now.
How did you find BCAN?
A very good friend of ours is a fire chief and he showed me BCAN’s resources. I am not the most computer savvy person, but he showed me how to find information on BCAN’s web site. And boy, is there a lot of information about bladder cancer. There are other stories about firefighters and bladder cancer too.
What advice would you give newly diagnosed patients or their caregivers?
I would advise caretakers to go out and search for as much information as you can find, including the BCAN web site. There is also word-of-mouth to help raise awareness; talk to as many people as you can about bladder cancer, especially to firefighters and their families. Try and be strong for your loved one: many people just give up hope and stop trying.
I just hope that someone else can benefit from what I have learned.