Reflections After Nine Years as a Bladder Cancer Survivor

Nine years ago, as I was working in my office, I felt a need to use the restroom. There was a strange sensation in my urethra that I’d never felt before. When I stood to urinate, I couldn’t believe my eyes. I urinated a solid stream of dark red blood. This is known as hematuria. It was frightening and I knew immediately what was wrong. I had bladder cancer.

After I got over the shock of that experience, I called my primary care physician to ask for his advice. He suggested that I see a urologist and I immediately made an appointment. The diagnosis was made by a procedure known as a cystoscopy. In this procedure, the urologist looks inside the bladder by inserting a flexible tube through the penis. The tube is lighted and carries a camera. This allows the urologist the opportunity to examine the lining of the bladder as well as the urethra. I must say that it is uncomfortable. The nurse administers a numbing agent as well as lubricant. The most difficult part of the procedure is feeling the pressure as the urologist inserts the tube through the urethra and moves it around in the bladder. I focused on my breathing to try to calm myself. It was not an easy task. Fortunately, the procedure doesn’t last a long time, so that makes it bearable. In my case, the urologist was able to identify the abnormal cancer cells on the bladder wall. A biopsy was performed in different areas of the bladder wall and that was the means by which pathologist confirmed the diagnosis. However, the pathologist confirmed what I already knew and felt inside.

What shocked me about all this was that I had no symptoms. I felt fine. I was eating right, and I had a regular exercise routine. All was right with the world, as far as I knew. And then cancer happened!

Just eight months earlier, when he was around the age of 80, my father-in-law was diagnosed with bladder cancer. At that time, we read everything we could find about bladder cancer in all the most recent research publications and clinical studies. My sister-in-law taught physiology at a medical school and was the main person we sought out for information about this diagnosis.

So, my father-in-law went through chemotherapy. His situation was touch and go for a while and he was very close to death, though he was very strong and knew we were all supporting him. He was in the hospital for a long time.

We were all thrilled that he pulled through and was discharged from the hospital just a few weeks before Christmas. This gave the entire family a huge reason to celebrate!

For my part, I kept my diagnosis from my family because I didn’t want to put a damper on Christmas. Then right after Christmas, when I told everyone, the shock was palpable. We all tried to figure out what my father-in-law and I had in common. After a lot of thought, we discovered that he and I both shared an experience of working with formaldehyde. I’d been a medical student and worked on a cadaver during my anatomy classes and my father-in-law had been a funeral director and mortician. The other thing we shared in common was that we drank water which came through old lead pipes. The most common cause of bladder cancer is due to smoking or working with leather or industrial chemicals. Neither of us smoked or were involved in any of those types of occupations. Bladder cancer develops as a result of changes in the urothelial cells, which are known as mutations. We don’t know what caused our cancers.

Unlike my father-in-law who was diagnosed with stage 4 bladder cancer, I was diagnosed in the earliest of stages. Since my cancer was contained in the bladder wall, it was easy to remove in my first surgery.

After my surgery I was given an intravesical treatment of Bacillus Calmett-Guerin. This is a form of immunotherapy in which chemicals are placed inside the bladder. The chemical solution stimulates the immune system in the body and causes it to fight the cancer cells. It’s one of the earliest well documented forms of treatment and it worked for me. The hardest part for me to deal with was having a Foley catheter inserted for a week or more, and a urostomy bag to collect my urine tied to my leg. The happiest day for me was getting rid of both of those awkward and distressing devices. It was really hard for me to sleep while using those devices. I could finally breathe a sigh of relief.

Several years passed and then it happened. The cancer returned. The thing I dreaded for years became a reality and I was really frightened. I was living my nightmare!

This second diagnosis came at the worst possible time since I had recently moved to take care of my elderly parents. As an only child, I felt responsible to be there for them since they had done so much for me while I was growing up. After about a month, I recovered from my second surgery and was able to return to my normal routine. This busy schedule included bathing and dressing my parents each morning, preparing three meals a day, taking my parents to their medical appointments, trying to provide different kinds of entertainment for them through movies and inviting friends to come to visit with them. I also kept track of all their medications as well as my dad’s insulin shots. Then every evening, I gave them a snack, got them undressed and prepared them for bed. Being a caregiver was a full-time job for me. I had to be available 24/7 as their nurse. That meant getting up in the early morning hours to help them in the bathroom and with toileting, comforting them from an anxiety attack or just being there when they had a rough night and couldn’t get to sleep again. I never stopped working. After six months and almost passing out from exhaustion, I learned that I had to take time out for myself to rest. I learned that lesson the hard way. I didn’t sleep very much since I was always listening in case one of them fell out of bed, which happened a few times, or if they called for assistance. I was always there, and I didn’t realize that I also needed care.

I ended up having to place them in an assistant living facility because the amount of care they required became too much for me to handle. By that time, both of my parents needed wheelchair assistance. When I took them to appointments, I had to pack two separate wheelchairs in the trunk of the car. I would get my mother out first and then come back for my father. It was emotionally and physically draining.

I visited them on a regular basis until they died. My mother passed away first, followed by my father a couple years later. The grief process took a toll on me but eventually, I got through it. The loss of both parents was devastating for me, regardless of my age. I really felt like an orphan.

Ever since that time, I felt uneasy, always wondering when or if the cancer would strike again. Bladder cancer is known to reoccur, so I lived in fear for many years. I still have a cystoscope check up once a year just to be proactive. A urine sample and PSA test are always ordered prior to the procedure.

I always remember feeling fine, while at the same time, realizing that I had cancer. It didn’t seem logical, and it certainly didn’t make sense to me. But that’s the way it was. And because of that uneasiness, I was never sure of myself.

Nine years passed and I was slowly beginning to feel okay with my diagnosis. Then another cancer developed a couple years ago.

Here we go again! I had to begin another cancer journey with chronic lymphocytic leukemia. The key word with this diagnosis is “chronic,” which means that people live with this diagnosis. And that’s what I’m trying to do. However, having diabetes complicates things for me. It adds to my stress and makes my situation more difficult.

I’m grateful that the bladder cancer is in remission. That means I can focus more on the leukemia. I’m grateful that the fear of recurrence has diminished for me and that I can relax more. I’m grateful that I can live my daily life and enjoy the pleasures of music, art and nature. Those are the things that give me joy. They lift my spirits and lighten my heart. I’m grateful that the lessons I learned from having bladder cancer have given me strength to face the new cancer diagnosis of chronic lymphocytic leukemia.

I have a heightened sense of awareness about myself and my body and I’m learning to appreciate my life as it is, living with cancer. I take the good days and the bad days with courage, strength, and determination.

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