Ben Olsen, long term survivor
It’s hard to believe twenty years have passed since my bladder was removed in April of ’82. Even though time seemed to stand still as we anguished through that difficult period and the wavy seas that followed, it now seems as though the years have gone by in a flash. Up to that time, I was healthy, energetic and actively involved in my small residential contracting business. My wife and I also shared a variety of interests and sports with our three teenagers. Winter skiing in Colorado and summer body surfing in Lake Michigan were the favorites. Not surprisingly, at age 48, I was stunned to learn I had bladder cancer.
For two years after the first tumor was removed, I followed an aggressive monitoring program which included cystoscopic exams every three months and annual intravenous pyleogram (IVP) and random biopsies of the bladder. Although this was inconvenient and worrisome, I was able to carry on my usual activities. There was no evidence of recurring cancer, and we celebrated after each exam.
Hubris ended early in 1982, however, with the appearance of a new, highly invasive tumor. At that time in Denver, the standard treatment for invasive bladder cancer was 4500 rads of preoperative radiation treatment followed by radical cystectomy and an ileal conduit urinary diversion. Four weeks after the radiation, which left me extremely weak and underweight, I underwent surgery. My recovery process was slower than anticipated due to recurring kidney infections which required hospitalization. On many days I was simply too sick to even hope for renewed health and energy, days when skiing with the family again seemed impossible. There were also periods of despair over urinary diversion, leaky appliances and impotence. Fortunately, family and
friends were there to support and encourage me as I slowly fought my way back. By the end of summer, I had resumed most activities.
In October, 1983, I had a semi-rigid rod penile prosthesis implanted (it later proved defective and had to be removed). A month later my right ureter closed, and I underwent revisionary surgery. Fortunately, the revision worked well, and I was free of kidney infection for almost a year. Then, my left ureter closed, blocking that kidney. We learned that kidney infections and strictured ureters are common occurrences ileal conduits. September through December, ’84, were a blur of misery and uncertainty. Two attempts to open the ureter failed, so a nephrostomy tube was inserted directly into the kidney. The tube was held in place by a plastic washer stitched to my back, a constant and painful reminder of my dicey situation. With the nephrostomy tube draining urine into a collection bag strapped to my left leg, and my ileal conduit draining into a bag on my lower right abdomen, I swaggered around like a lopsided cowboy carrying a pair of loaded six shooters. Ever-present bacteria had a short and direct route to the kidney through the nephrostomy tube, and we were afraid a severe kidney infection might take hold before a solution to the problem could be found. Although no one wanted to subject me to the risks of a third urinary diversion surgery, we knew my kidneys would continue to deteriorate without a urinary diversion that functioned properly. There simply was no way to avoid additional surgery.
Fortunately, in January, 1985, I was sent to Dr. Donald G. Skinner, Chief of Surgery at the Kenneth Norris Cancer Center in Los Angeles. In a lengthy, complex procedure, Dr. Skinner opened the closed ureter, removed extensive radiation scar tissue and created a Kock continent urinary reservoir with an abdominal stoma. During the same operation, Dr. Stuart Boyd removed the
defective penile prosthesis and replaced it with the first stage of a three-piece inflatable prosthesis. The second stage was completed six months later during a short procedure and restored complete sexual function. Once again, the good news was there appeared to be no evidence of cancer. My problems were caused primarily by radiation scarring. My Kock pouch is catheterized 5 – 7 times a day and is easy and convenient to manage
These three major surgeries in such a short period certainly took their toll. Thanks in no small measure to the support of family and friends, and the skill and care of the entire "Norris" team, I was able to get back to my work and family. To prove to myself I was all the way back, at age 59, I finally tried board surfing in Hawaii. The thrill of catching a wave was exhilarating, a thrill surpassed only by the fact this wave was just for fun, and I was, indeed, a survivor!
In 2005, I reluctantly gave up surfing, but fortunately I continue to ski, swim, hike, bike, garden, and play with grandkids. There is life after radical cystectomy, and it is good!
Top: Ben Olsen, catching a wave
Under: Ben, son Tim, daughter Kristin, Roni
For an article on urinary diversions which was contributed to WebCafe by Ben’s wife Roni, click here