Like others, I had symptoms without a bladder cancer diagnosis for some time – urgency and frequency for eighteen months. I had discussed both with my physician after about nine months. He said that I was getting old (I was only 48!) and my father had prostate cancer. Knowing that I could do nothing about either, I did exactly that – nothing — until I saw a faint tinge of blood at the very end of my urine stream eighteen months later in August 2006. I knew this was serious and went straight to a urologist that very day. He confirmed blood in my urine, and also suggested that I was “getting old and my father had prostate cancer.” Fortunately, he wanted to do a cystoscopy to check out my bladder. Appointments for cystoscopies were about a month out and I scheduled the first available appointment.
During my cystoscopy, my doctor stated very clinically that you “have a tumor.” The CT scan provided additional detail about that tumor. The resulting pathology from the TURBT (Transurethral Resection of Bladder Tumor) and associated biopsy of that tumor was a muscle-invasive, high-grade bladder cancer diagnosis.
I was advised that my bladder would need to be removed — I was devastated. And scared. I quickly set out to locate the best care and found an incredible surgeon at a major cancer center. Twenty-three days after my diagnosis I was in surgery.
Choosing my diversion was a challenge, as I had no access to other survivors (I did not connect with BCAN until much later). After carefully considering the input of the doctors who were candidates to do my surgery, I choose the neobladder. I knew the surgery and recovery would be longer, but liked the fact that the process of urination and my body would be about the same. I did what I could to build some muscle mass, as I was warned that I would go for several days without food and that the body would burn muscle first rather than fat (if only the opposite was true!). The surgery prep was unpleasant but certainly not life-changing. I was reminded that I do not like Jello or anything designated as “clear liquids.”
My surgery was a little over five hours, and I spent seven days in the hospital. Day four was the most difficult as predicted. I was unable to eat until then, and lost close to 20 pounds at the lowest point. They tell you to “walk, walk, and walk some more,” and I did my best to heed this advice. After passing gas, I was allowed to eat something. You cannot imagine how wonderful Jello tasted on the other side of the operating table!
I learned how to flush the mucus from my neobladder. Instruction on how to properly stretch my neobladder, constructed from two feet of my small intestine, was given once the catheter was removed. I voided what urine had not leaked every two hours for the first week, every three hours for the second week, every three hours during the day and four hours at night for the third week, and then every four hours for the fourth week and ever since. Having to get up so frequently during the night was a challenge, and I used three alarm clocks. I did not want to waste precious sleep time setting the alarm for the next wake-up to empty my bladder. It was four weeks after surgery before I returned to work. I wore a guard (pad) and worked four hours a day that first week. But I was on my way back to a normal life.
I was fortunate to have had great care and great results. Today, I am not hindered in my ability to do what I want. Perhaps most important, bladder cancer has been transformational. As I have stated in the past, “I would gladly give up the cancer, but not what it has taught me about Life and Living.”
I remember being in the waiting area outside the clinic, completing the myriad of forms that were provided. I was asked to participate in studies being done on bladder cancer: quality of life with a neobladder versus an ileal conduit, and some tissue bank/genetic studies. I did not think twice about participating; I would gladly have signed up for more. I vowed at that moment that “some good must come of this.”
“Some good must come of this” has been my mantra, my North Star, since that time. I sought out experiences that would give me a better understanding of our battleground, and provide an opportunity to network with others – all so that I might give back. I became aware of a BCAN-sponsored symposium in Cleveland, OH. There, I met BCAN Co-Founder, Diane Quale. [Click here to read Diane & John’s story.]
That meeting resulted in a working relationship with Diane that has been incredibly rewarding. She asked me to back-fill her role as the Bladder Cancer Patient Advocate at SWOG, a group funded by the National Cancer Institute that does cancer clinical trials. I am now the Chair of the Patient Advocate Committee there, the Co-Chair of the NCI Patient Advocate Steering Committee, a Patient Advocate for the NCI Genitourinary Scientific Steering Committee, and the Bladder and Penile Panel Patient Advocate for the National Comprehensive Cancer Network which defines the standard of care for cancers. I also work as a patient advocate in the prostate cancer space. All of these experiences resulted from meeting Diane that day in June 2009, and are the most rewarding work of my life. Without BCAN, I would not have had a vehicle to pursue my passion and fulfill my vow that “some good must come of this.”