In 2016, at age 58, I was noticing changes: I needed to urinate more frequently, my stream wasn’t as strong and I was waking up several times each night. It seemed like the natural aging progression. When small ribbons of blood appeared in my urine, I contacted my physician. The urinalysis wasn’t definitive and I wasn’t responding to antibiotics so a CT scan was ordered. What followed was a diagnosis of bladder cancer — no shades of gray or any doubt. At that point I had no idea that bladder cancer even existed.
The next two weeks were shockingly active. I met with the first urologist who scheduled a surgical procedure called a TURBT where they remove as much of the tumor as they can and biopsy the tissue to determine how far the cancer has progressed (staging). Within a few days, we met with him to go over the results.
He confirmed the diagnosis of muscle invasive bladder cancer and referred me to another urologist in the practice to discuss the surgical options and schedule the procedure. He explained that the standard protocol was neoadjuvant (before surgery) chemotherapy followed by a short recovery period then the surgery. He briefly discussed the various urinary diversions and told me I would need to make a choice before the surgery. He scheduled a follow-up outpatient appointment where he would look at the bladder and arranged for a different surgeon to install a port for the chemotherapy and blood testing. He walked me over to meet the oncologist who discussed the drugs she would be ordering and scheduled me to start the next week.
The oncologist prescribed four, three week cycles of Gemzar and cisplatin. It was more time consuming than I expected and while I was able to work through most of it, I was thankful to be in a position where I could take time off without losing my job.
It is a challenge when you face a diagnosis of a disease you know nothing about. Without BCAN I wouldn’t have understood the implications of the choices in urinary diversions nor the importance of finding a surgeon who is an expert on the diversion selected. The sooner newly diagnosed patients connect with BCAN the better off they will be. Information is a key to reducing the stress that comes with a diagnosis of cancer.
The knowledge I gained from BCAN and the Inspire online community helped me with the decision to forego treatment at my local hospital and find a surgeon at a National Cancer Institute (NCI) hospital that specializes in treating bladder cancer. It meant traveling 100 miles each way for appointments and the surgery but I believe it was the right decision and led to the best possible outcome.
The bladder removal surgery (radical cystectomy with neobladder) was in June of 2016 at the James Cancer Center in Columbus Ohio, part of the Ohio State University. The journey to recovery starts right away with short walks around the hospital floor. Exercise is an integral part of the process physically and mentally.
After a week I was back home with only a catheter. At first it was exhausting to walk to the end of the driveway or take a shower but with my wife’s care I was walking two miles at a time within a few weeks. I learned that the recovery process is seldom a straight line so patience and perseverance are required.
I was back to work (part-time) seven weeks later after surgery. A few months later I attended the BCAN Leadership Summit in Maryland.
Here are a few things I learned along the way:
- Go to an NCI affiliated Cancer Center. Get a second and possibly a third opinion quickly. The one area you have control is selecting your healthcare partners – don’t be afraid to ask the tough questions: How many of these procedures do you do in a month? Can I speak with a few patients that have been through this?
- Avoid big decisions while you are going through chemotherapy. These are harsh chemicals that may leave you with an inability to focus or think clearly.
- You play a major role in your recovery. Do what you are taught in the hospital and even if you must force yourself, walk every day. Be vigilant in your follow-up.
- Use this as a wakeup call to do some of the things all of us put off: Do you have a durable power of attorney and living will? Have you put together a document with your key accounts (banking, investment, insurance etc.) that includes contact information and passwords?
Several of the posts and articles I read by people who have had this procedure they talk about a “new normal.” At first, I rejected this phrase, but have since come to embrace it. Physically, I’m getting used to my new normal.
Healing is about getting better. But it is also about giving back to the communities that help you get through this difficult time. I am committed to educating people about this disease, providing comfort to those going through a similar experience and offering financial support to organizations like BCAN that fund research to help eradicate bladder cancer.