At the age of 42, with my wife who was not quite 40 yet, we had become used to the questions that couples without children get from family, friends, and strangers. We were at peace and confident in our decision to remain childless. Of course, without a prostate, that decision was as final as could be.
About four years ago, doctors found a quarter-sized tumor, malignant and deeply embedded, in the wall of my bladder which simply could not be removed. I learned quickly that once high-grade bladder cancer (urothelial carcinoma) invades the muscle wall, there is very little one can do to prevent it from coming back again.
Any kind of malignancy is an ordeal, but I was to have one of the most oft-utilized organs in my body completely removed and replaced with a new urinary diversion, which presented a whole different set of decisions. And, my prostate would not be spared if I wanted to get out of this with a chance to be cancer-free.
My wife’s role turned to that of a caregiver long before any surgical procedures were scheduled. Justified anxiety and a tendency to worry clouded my initial outlook. I turned to online articles spouting survival statistics (which have not changed for over 30 years), as well as the varying complications one could have whether they chose a new man-made bladder–a bag outside the body–or a relatively new diversion called the neobladder, where the urinary bladder is made out of your own intestinal tissue and constructed to stay inside the body.
What really concerned me was how I responded to stress up to that time in my life. I had always been a highly anxious, worried boy who matured into a stressed-out young man, and ended up entering middle age with a few better coping skills–yet with the same old tendency of allowing worry to overtake me. Lo and behold! I surprised myself when the most crucial event of my health history had arrived. There I was, standing up to it, calmly researching it, educating myself, reaching out in online forums to others affected by bladder cancer. This, most definitely was not the “me” that I knew.
A key difference was a family counselor I had reached out to, for help with anxiety and depression through an employee assistance program a couple of years prior to the diagnosis. She introduced me to meditation and other practices; she got through to me in a way that other professionals had not, especially when I was seeking help for anxiety in my 20s and 30s. More importantly, she listened a whole lot better than others.
I had also taken charge of my health by asking my hometown urologist for a referral to a nearby National Cancer Institute (NCI) designated hospital. Knowing I was in the care of one of the most respected urologists/oncologists in the country boosted my confidence and enabled me to own my diagnosis. I started to look for the positives in my decent physical condition, my relatively young age, and began building on those by pushing myself into optimal physical shape before surgery. The tumor produced no pain, or other symptoms, aside from hematuria–which had alerted me to the problem. I dove into research that focused on post-surgical rehabilitation and recovery, as well as all possible outcomes of surgery if things didn’t go as planned.
Friends, family, and of course my wife, played an important role in holding me up–not only through the initial shock of my diagnosis, but the recurrence that would follow six months later, after my first post-surgery CT scan.
Another lengthy, and now risky curative surgery, radiation therapy, and the decision to meet with a clinical trial doctor would follow. But with the support I received and the preparations I had made, I was able to keep my head through it all (except for a few "Why me?" moments).
Now, fortunately, due to an available clinical trial for nivolumab, I am enjoying remission. However, I’m ever mindful of the possibility of recurrence and the unknown landscape of immunotherapy’s durability after it has shrunk, stabilized, or eradicated metastasis.
I find myself living life as completely and fully as I did before but with a far different perspective on how to move forward confidently, and with disregard for paying attention to the “small stuff” when unwarranted.
In this way, the illness has probably improved my life, and that improvement includes the ability to get to know others–patients and caregivers who are also living through the maze and sometimes tragedy of cancer.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: John Fisher, 47 is an information technology specialist in Cedar Rapids, IA, who has battled bladder cancer and metastatic bladder cancer for four years.
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