Dianne’s Story: I Thought I Was Going to Die

In December 2019, I had a tiny bit of blood in my urine, which prompted me to see my primary doctor. He believed that it was a bladder or urinary tract infection and gave me antibiotics, which made me feel better. Later that week, I was scheduled for an appointment with a urologist who assured me that it probably was nothing but said he would schedule me to come in for a cystoscopy.

That was my first time having the procedure done, and I thought it would be just like any other scan I have had in the past, so I told my husband he did not have to come with me, not knowing that I would find out I had two cancerous golf ball size tumors which later was revealed to be high grade, non-muscle invasive bladder cancer.

Hearing the news was paralyzing. I remember getting in my car and just crying. I immediately called my husband and told him the news, and he felt terrible he was not there. He kept reassuring me that we would get through this. This was not something either one of us was expecting. Four days after my cystoscopy, I was scheduled to have a TURBT (trans urethral resection of a bladder tumor) procedure. They explained that part of that surgery would be biopsy and removal, determining what grade I had. I am sure they said more, but at that point, all I could think was, “I’m going to die.”

I had taken a week off to recover from the surgery, and to my surprise, I bounced right back. I was scared, but everything went well. Things seemed to be going in the right direction until a week and a half later, there were complications. I woke up in the middle of the night and I felt like I had to urinate, but I couldn’t. When I turned the light on in the bathroom, the toilet was filled with blood. My husband and I immediately went to the emergency room. They discovered lots of blood clots in my bladder. So, I had to have a hematuria catheter for five days. Nobody knows how tough that is unless they have been through it

I had my first virtual appointment with a new urologist, Dr. Shin, at the end of April. He was new to me because my urologist had retired. Dr. Shin was so funny and nice. He wanted to spend the first 10 minutes just talking because he said we would be lifelong friends. The time he took to talk and get to know me meant so much. He let me know that he wanted to go back in and do another TURBT. Of course, that scared me because of my prior experience, but he made me feel comfortable. The second procedure was done and there were no complications, which was great. They found a few more tumors and removed them. I was told my next steps would be chemotherapy.

I started my chemo treatments in June of 2020. I received treatments once a week every six weeks for 11 months, with two months off. I did have some nausea, but thanks to the nurses, they knew exactly how to help me. We would come up with what they called a cocktail of when to take the Zofran which is for nausea, and how to take it. We did really well.

Each hospital has their own protocol for how they administer the treatments for bladder cancer. They sometimes inject the chemo into your bladder using a catheter, and then you take the catheter out, go home and hold it for an hour, then urinate it out. Mine were done a little differently.  I was allowed to keep the catheter in for the hour and then let me pass the medicine through it. That helped a lot to limit the irritation of the urethra. My husband was there with me at every treatment, and he would joke around with me about how great and efficient my team of nurses was. He is also older than me and people would assume he was the patient, and we would joke about that.

I really felt supported by having my husband, family, and care team at the hospital. It was essential to have them there to listen and help me not get upset or annoyed because that happened quite a bit. As I mentioned before, the nurses were the best. One of my appointments was on my birthday, and when I came in that morning, they had balloons for me. That meant so much. It made my birthday that much better, considering the circumstances.

I finished all my treatments in May of 2021. I am currently going every three months for my follow-ups, and so far, there is no evidence of disease. When I was going through my treatments, I did not have to worry about missing work because I am a teacher and since this was during the pandemic, I could be home and do class via Zoom.  

They always say when you are diagnosed with something, do not Google it, but I did. I found a lot of helpful information and that is how I was introduced to BCAN. I wanted to know what I was looking at because those days waiting for the pathology to come back, you are thinking, is it low grade? Is it high grade? Before this, I had an idea of what cancer was, but that was the extent of my knowledge. Doing my research and reading the stories of other patients on BCAN’s website helped me understand and know what I was dealing with. Unlike what doctors tell you not to do, I found that doing my own online research was helpful.