I am a busy guy: a telecom business owner and house flipper. Being busy, oftentimes we neglect to take of ourselves. Ask a single mom or a surgeon and they will likely tell you the same story!
However, I had two episodes of bleeding when urinating about three months apart in early 2016. Thinking it was a small kidney stone, my wiser family practitioner said, “Let’s get that checked out.” I am so thankful for this sharp doctor who accelerated my diagnosis, as it ended up being HGTa, which was later upgraded to HGT1 after a second opinion.
My partner and I were in the middle of the process of selling our home in Orlando to start our new life of living in two cities- Orlando on the weekends and Gainesville, Florida where my husband is faculty at the university. Renovating a weekend house in Orlando AND building our new house in Gainesville PLUS my business! The stress of my diagnosis, plus the three houses meant a lot of honest talking about our fears, and what-ifs. Fortunately, having a spouse and friends in the counseling and wellness field provided a great support system to manage those feelings.
The side effects of the BCG were a bit rough for a few days, but it helped me to stay busy so that I wasn’t dwelling on my situation. I used a lot of positive visualization during my BCG treatments to help get me through. Just like the Raid commercial I would envision the cancer cells as little roaches dying on their backs, and the BCG as the large can of Raid!
My cancer center has a beautiful garden park where I meditated before treatments, drawing strength from within and those that have walked the paths before me. Then, humming the theme
from Rocky, I would go in the treatment room and commence kicking some cancer butt. This is what worked for me. Do whatever works for you!
My bladder cancer experience taught me to not sweat the small stuff. I have also become quite proficient at navigating our health care system, pressing politely but firmly for the answers I want and need. I am approaching this disease from a tactical perspective and have a clear plan along with my doctor-team as far as next steps.
When I found out that my hospital had no BCG for maintenance, I researched the facilities that did and planned for a consult out of state. I am thankfully fortunate to have the means, the support of friends and family, and knowledgeable contacts to make it happen. For me, continuing BCG was critical because in the event of a recurrence I would be ineligible for clinical trials if more than six months elapsed.
BCAN has been a tremendous resource for information, and it has been as helpful for me to share my story and tips, as it is to read of others’ stories. We are members of a club that no one wants to be in, but the intelligence and fortitude of my fellow bladder cancer folks is awe-inspiring. Attitude is everything! It is absolutely ok and normal to be scared…. to wake up in the quiet of the night in tears as you process your diagnosis, the treatments, and the potential outcomes.
But once I came to grips with bladder cancer, the best thing for me was to have an action plan. Lack of control over our lives and privacy can be mitigated with becoming educated and knowing what your care options are. Prepare beforehand and ask questions of your medical team. The more active participant you are in your care, the more your care team can help. If you are made to feel less than important or stupid and you have truly been an active participant in your care, find another team! Your life may depend on it.
I will say that I am concerned at the lack of initiative or involvement I have observed in some men at support groups, and the forums. It is so critical that you take charge of your care, get a second opinion, and not depend on your spouse to carry the heavy end of the log. This means, memorize your medications, know your past and scheduled procedures, and stay active in the process.
Stories like Darrell’s really make a difference for much-needed awareness and to support others who are somewhere on the bladder cancer journey. We know this because our patient stories are the most trafficked section of our website. Tell your story here. You will be helping someone like you!