Life with nephrostomy tubes was a dramatic improvement over life prior to my hospitalization. With my urine diverted from my kidneys into collection bags, I didn’t have to worry about frequency and urgency. I was no longer incontinent at night, which meant the end of adult diapers. I figured out that I could hide the nephrostomy bags in my pants if I safety-pinned them to my shirt and could play tennis if I put them inside compression shorts to keep them from moving around. We flew back to Vermont for a long weekend in October because I could now manage airline travel, though TSA airport screening was a bit more interesting than usual.
Nephrostomy tubes are not a long-term solution. The nurses had to teach Laura how to change the dressings on my back every few days—she became quite proficient. Once in a while the tubes painfully got caught on something, and on two occasions, I had to go back to the hospital to have them reinserted or adjusted. Showering was an adventure since I had to wrap my midsection in cellophane to keep the dressings dry. Turning over at night with bags of liquid attached on both sides is a skill that required practice to perfect.
A NON-FUNCTIONING BLADDER
The doctors decided that I should “cap” the nephrostomy tubes in mid-October, 7 weeks after they were inserted, in the hope that my bladder had recovered and my urinary system would return to normal. With the tubes capped, urine once again flowed through my bladder but the nephrostomy tubes remained in place so I could revert to collection bags if needed. Capping and uncapping the tubes was a simple procedure that allowed me to test the system by gradually increasing the amount of time that urine flowed through my bladder.
It took less than 2 weeks to conclude that my bladder no longer worked. I had abdominal pain within a few hours of capping the tubes and frequency and urgency were issues during the day. Once again I was incontinent at night. A urologist who specializes in urinary dysfunction and incontinence did not have much to offer in terms of solutions.
Reluctantly and sadly, we came to the conclusion that my only real option was a cystectomy, surgery to remove my bladder. I was tired of living with nephrostomy tubes and had no interest in trying treatments such as Botox injections into the bladder that had little chance of making a meaningful difference. A conversation with a cousin who had undergone a cystectomy in August was encouraging. I decided to schedule the surgery as soon as possible. I was done.
BLADDER REMOVAL SURGERY
I had my fifth surgery in 14 months, a radical cystectomy, on December 15, almost exactly 1 year after I opted for the bladder-saving treatment option. Unlike my previous 4 surgeries that were done on an out-patient basis, I was told to plan on 5 to 7 days in the hospital following the surgery and a 2-month recovery during which I should avoid strenuous exercise, such as lifting more than 5 pounds. The surgery took approximately 6 to 7 hours, during which my bladder was removed and urinary tract reconstructed using an approximately 1-foot section of my small intestine to reroute the urine from my kidneys to an exit point a few inches to the side of my navel. The technical name for this procedure is an “ilial conduit reconstruction”—I refer to it as “replumbing.”
In retrospect, life over the previous year would have been a whole lot easier had I opted for a cystectomy instead of trying to save my bladder…and it is quite possible that my cancer prognosis would be about the same. I certainly thought about this in the days leading up to and following the surgery, but life does not work that way. I have no regrets. I was—and am—confident I made the best possible decision I could have made given what I knew and understood at that time. I was fully informed that 10% to 15% of people with stage II bladder cancer who try bladder-saving treatment will ultimately lose their bladder. I just did not think I would be one of them.
In retrospect, life over the previous year would have been a whole lot easier had I opted for a cystectomy instead of trying to save my bladder.
The surgery confirmed the nonfunctionality of my bladder and the decision to remove it. Removing my bladder was extremely challenging because it had contracted, was wedged into my pelvis, and the radiation had caused it to adhere to the prostate and pelvic wall. The plan to also remove my prostate was cancelled because of radiation side effects. The good news was that the pathology report found the removed bladder to be completely clear of cancer, as were biopsies of the urethra and lymph nodes taken during the surgery. As you would expect, the 4 days in the hospital following surgery were less eventful than my hospital stay in September.
I lost 10 pounds in the immediate aftermath of the surgery, which brought total weight loss over the course of my cancer treatments to 35 pounds. I did have one complication from the surgery. I developed overnight pain in my left hip about a week after going home, pain strong enough to resume my routine of alternating between Tylenol and ibuprofen every 3 hours with a little oxycodone thrown in at times. I attribute the pain to having spent several hours with my hips wide open during the surgery, similar to what happened to a cousin who had the same surgery as mine. Fortunately, a cortisone shot in the hip took the pain away long enough for the hip to heal.
LIFE AFTER CANCER
I formally declared myself to no longer be a “sick person” when my 2-month post-op restrictions were lifted, but it took another 3 to 4 months for me to feel fully recovered from 16 months of cancer treatments. Oddly, it was only as I was regaining my strength and energy that I realized how much I had lost. I was surprised at how frequently friends told me how much better I looked than before. Being able to easily hike to the top of Mount Tom near our Vermont house caused me to recall how 6 months earlier it had been a challenge to walk 6 blocks on level ground from our Bethesda house to downtown and back. My appetite gradually returned—chocolate chip cookies tasted good again—and I was glad to gain back 15 to 20 of the 35 pounds I had lost. And it was a relief to no longer have medical appointments dominate my weekly schedule.
The big change for me is that I must manage my ostomy…..this is a permanent system that allows me to go about daily life pretty much as I did before the surgery.
The big change for me post cancer is that I no longer have a bladder and must now manage my ostomy on a daily and weekly basis. I have an outlet for urine (a “stoma”) a few inches to the right of my belly button and a collection bag system that captures and holds the urine for disposal. Unlike nephrostomy tubes, this is a permanent system that allows me to go about daily life pretty much as I did before the surgery. A small group of ostomy patients that convenes by Zoom every few months has provided support and helpful hints on living day-to-day with an ostomy, including how to play tennis, swim, shower, and go through airport security.
Three companies compete to provide ostomy products to the approximately 500,000 Americans who need them. It was interesting how ready the companies were to provide me multiple samples from their product lines, probably because most people who get an ostomy rarely if ever change from one company’s products to another’s once they get started. I suspect it is a profitable market since users typically change their collection bag system every 3 to 5 days, with Medicare or private insurance covering most of the cost. I also acquired a “Stealth Belt” from one of the smaller companies—a support belt that stabilizes my ostomy bag for swimming, exercise, and overall comfort. The company’s motto is “Go Anywhere. Do Anything.” Maybe a motto for life post cancer.
It has been quite a journey—one I hope is at an end. I get surveillance MRI and CT scans every year looking for recurrences of the cancer. Since I no longer have a bladder, the scans look for cancer in metastasized form in my abdomen, torso, and chest.
So far, scans have shown no sign of cancer, and with each cycle the level of my “scan-xiety” goes down a notch. I still get a bit nervous with each surveillance, but as best we know I am now a cancer survivor.
This article concludes our series following David’s journey with bladder cancer from diagnosis through treatment, clinical trials, remission, and survivorship.
