Allen’s Story: Anger, Denial, Then Acceptance

In March of 2014, I was diagnosed with stage two bladder cancer.

I went in for my annual check-up with my general practitioner and he saw something in my blood work that he did not like, so he requested I do another blood draw. During the next six weeks, I started noticing some symptoms that I now recognize as bladder cancer, but I still knew that something was wrong. Once my test results returned, my doctor referred me to a urologist, the urologist ordered a CT scan, and it was then the urologist discovered my bladder cancer. That news was shocking for me. It was an out-of-body experience, almost as if I was standing outside myself trying to comprehend what was being said.

One part of me was thinking, “This is not really happening,” and another saying, “Wow. I didn’t expect that.” Like with death or any other life-altering experience, you go through those stages of grief. Anger, denial, acceptance, and it takes you a while to work through it, but you work through it. After trying to process everything, it was time to focus on what the next steps would be.

My urologist, Dr. Kraebber, was very big on preserving my bladder. He performed a trans urethral resection of a bladder tumor, a TURBT, to remove the tumor from my bladder then referred me to an oncologist. I had six sessions of cisplatin and gemcitabine, which I tolerated pretty well. The chemotherapy was not effective at reducing the size of what was left of the tumor. So, I considered the three alternatives that everyone does. The ileal conduit, the neobladder, and the Indiana Pouch, and I chose the typical ileal conduit. Dr. Kraebber referred me to a different surgeon who was very experienced and had done thousands of these surgeries.

I was told that the surgery for bladder removal and an ileal conduit takes six hours, but my surgeon, Dr. McCarthy, was able to do mine in three. I was only in the hospital for three days and had a pretty good recovery. Thankfully, my lymph nodes showed no signs of cancer. The bone scan showed no signs, and my first scan in January 2015 was clear. I assumed we were done; then, in January 2016, the scan showed that the cancer had returned. Even though I did well with the chemo, thinking of going through that all over again was tiring but I knew I needed to. So, I went through another round of chemo and immunotherapy a year and a half later. For the last four years, I am happy to say I have been no evidence of disease.

Later, I attended a few support groups in Southeast North Carolina. We have a really good WOC (Wound, Ostomy, Continence) nurse and started a support group for people with urostomies, colostomies, and ileostomies. Through that group, I discovered BCAN because, at that time, back before COVID, we met in person, and people would come in. They would have really good speakers. Some of the people in my group were going to the BCAN meetings and they would bring back and share the information. That is how I was introduced to BCAN.

Volunteer work was always something I like to do, and when I received an email from BCAN about their Survivor-to-Survivor program, I immediately signed up. I did the online training, and I have probably spoken to about seven or eight men. We keep in touch, and they give me updates. Some updates may not be the best news, but this experience is therapeutic for them and me. It helps you put things into perspective, and it helped me have a better outlook on life and death. I am not as afraid of it as I used to be. No way am I saying I am going to pass away tomorrow. It may be 10-15 years; I live my life to the fullest. Appreciate the time you have with the people you love.

Another thing I have noticed is that some men can be sometimes more concerned about their appearances. When you have this apparatus or this appliance on your stomach, you become self-conscious. I try to tell people that time is your friend, and you get over it over time. If you lost your hair or had the plumbing redone, your body adjusts to it over time. Your mind, everything, adapts to it. You have to give it time, and if you find yourself not adjusting, you should seek professional help from a counselor or therapist. Do not be afraid to. It will only benefit you on your journey and make things a little easier.

I want to end my story by advising others going through this journey. Some advice I give to the men I speak with at Survivor to Survivor is always ask your doctor, consider getting a port for going through chemo, and surveillance is essential. Bladder Cancer research has increased my life span. Immunotherapy drugs like Tecentriq and Keytruda have become available since I was diagnosed in 2014. A new antibody drug (Padcev) was approved by the FDA in December 2019.  If my cancer returns again, there will probably better drugs to cure me.