November 2019 would be one of my life’s saddest and most confusing times. At 54, I was told that I had bladder cancer. Before my diagnosis, after emptying my bladder, I would get a dull pain that I thought was just a cramp. A few weeks went by, and this time not only did I have that same pain, but I also had blood in my urine. Frantic and scared, I called my wife who was just as concerned, and she insisted that I see my primary care doctor immediately. Upon my visit, the doctor referred me to a urologist.
At my visit, the urologist recommended that I get a CT scan. A couple of days after my scan, he called me in for an appointment to give me the results. I did not think that this appointment would go the way it did. So I decided to go alone. He went on to tell me that he thinks I have Stage II bladder cancer. My first thought was, “What? Cancer? That’s got to be wrong.” I was in denial. How could I have cancer? My drive home from the urologist’s office was pretty dreary and sad. I contemplated not telling anyone but ended up calling my sister because I needed guidance on how to tell my wife. My sister told me, “Well, you need to tell Tina, you need to tell her, and you need to come up with a plan.” I knew she was right, and soon as I returned home, I broke the news to her.
After telling my wife the news, I could see how sad and scared she was from her tears. It was difficult for her to wrap her mind around the idea of losing me.
My urologist needed to confirm what he thought was true, so he scheduled me to have a cystoscopy where they took a look at my bladder and took some samples to be biopsied. This confirmed his assumption. I had stage two bladder cancer. I planned my visit with an oncologist at Texas Oncology, and we discussed my options and next steps. The oncologist explained that there was an immunotherapy trial that I qualified for that would help boost my immune system to help fight the cancer, and I would be doing that in conjunction with the chemotherapy. I was scheduled for twelve chemotherapy sessions, and by the second session, I could not bear it. I managed to get through two more but told my wife I could not take it any longer.
While going through chemo, I felt my body deteriorating. The sickness I felt was intolerable, and if this was how I felt after only four sessions, I did not want to see how I would feel after twelve. After speaking with my wife, we decided it would be best for me to have the surgery to remove my bladder. I scheduled an appointment at MD Anderson, and that is where I met Dr. Ashish Kamat, who also introduced me to BCAN. [Note: Dr. Kamat also serves on BCAN’s Scientific Advisory Board).
“As I entered the hospital, I was sobbing. The feeling of [my wife] not being with me on this part of my journey got to me.”
Andrew
After meeting Dr. Kamat, he agreed with my decision and gave me two options. I could either do the ileal conduit or an external bag. The external bag was the best option based on the pros and cons. It was easier to maintain and a faster recovery. Dr. Kamat introduced me to Dr. Thomas, who would be the surgeon performing my stoma. We scheduled the surgery for March 28, 2020, at the height of the pandemic. It was a sad day because my wife was not allowed to be there with me. We rented an Airbnb across from MD Anderson, and she stayed there and waited for me. As I entered the hospital, I was sobbing. The feeling of her not being with me on this part of my journey got to me. I called for a chaplain, and he helped me to calm down. He said, “You have the best doctors here. This is the best facility in the world for these treatments. And these doctors have done this several times, hundreds of times. You’re in good hands.” We prayed then I was off to have my surgery.
The surgery took five hours; it was pretty intense. I woke up in pain, but everything went well. By the second day, I could walk around, but I felt myself having a pity party. I was feeling sorry for myself and pouting all day. One of the nurses came in, and she could see how down I was, and I remember her saying, “What are you going to do, just sit there and get worse?” She encouraged me; she said, “You’re going to get up now. You’re going to take a shower.” That is what I needed. I started eating again and was released from the hospital April 1.
Things were going well until a few months later. I noticed that I was having complications. We were eating pizza, and I started to feel a tightness in my chest. I vomited for the rest of the night due to this awful pain. We went to the hospital that night, and the ER doctor informed me that I had an intestinal blockage because of a hernia on the stoma. My wife and I thought that everything was going to be ok after the procedure but after being released from the hospital, the next morning I was back in there. The pain was so bad that I just wanted it to be over. I could not think about going another day with this pain. We soon discovered that they did not repair the hernia the first time they did it. Thankful the new doctor went in and fixed it the way it should have before, and I started to feel so much better.
Despite the rollercoaster this journey took me on, I am very grateful for where I am now. I have not had a leak from the bag in two years. Yes, it took some time to get used to and develop a routine, but I am happy with my decision. I am grateful for my wife and friends. They were a blessing. Reading the different stories on BCAN’s website allowed me to see the different choices other patients made and what worked and did not work, which helped me in my decision-making.
Whoever reads my story, I want to leave them with a piece of advice. If you find yourself feeling down, find something to take your mind off it. Whenever I had visitors in the hospital to take the focus off of me, I would ask them if there was anything I could pray for them. I joined a Facebook group and ostomy groups. It felt good to speak with others going through this and give advice. I also want to express how important it is to ask questions and get a second opinion. Do not be scared to question your doctor.
