Alan’s Story: Celebrating My One Year “Stomaversary”

In 1980, I was diagnosed with Reiter’s syndrome, an autoimmune disease consisting of a triad of symptoms, iritis, urethritis, and arthritis. Over the years, individual symptoms would occasionally flare up. My eyes would burn, or my joints would hurt, and if all three flared up simultaneously, I would have to be hospitalized. At the start of 2020, I started to experience back pain and burning when I urinated, and because of my arthritis, I didn’t think much of it.  I thought, “Well, I’m going through Reiter’s.” A few months passed, and these symptoms were not going away, so I decided to make an appointment to see an orthopedic doctor. Unfortunately, he let me know that he did not see any concerning issues and referred me over to a rheumatologist who could not find anything as well, but she did want to take a urine sample. The urine sample revealed microscopic traces of blood in my urine and I was referred to my local urologist.

Finding the tumor

I saw my local urologist and he performed a cystoscopy in his office. I had no idea what a cystoscopy was but for some reason I was under the impression that this would be performed while under anesthesia.   As it turned out, I was awake during the procedure.  For those of you who aren’t familiar with a cystoscopy, it’s perhaps the least fun thing done voluntarily to you while awake. A metal tube with a small camera on the end of it is inserted the wrong way up a one-way street. After being warned of “a little pressure and a small bump”, I was looking at a TV monitor displaying the inside of my bladder. As we visually cruised around my bladder, the doc pointed out this big red ugly tumor, and said, “That’s cancer, and we need to get it out.” He let me know we needed to act quickly.

Decision to have my bladder removed

Three days later, a transurethral resection of a bladder tumor (TURBT) was performed in the hospital.  The pathology report came back with the very bad news; Invasive high-grade micropapillary urothelial carcinoma, invading into the lamina propria.   After looking at the tumor, the doctor informed me that I had a few choices. Do nothing and I would die within a year; or I could do a series of BCG treatments, maybe chemotherapy and some surgeries to remove and control the cancer, but the possibility of it coming back was very high. The micropapillary tumor I had was very aggressive and could have spread to my lungs. That made my decision easier. We agreed to remove my bladder and he referred me to Dr. Amling at Oregon Health and Science University (OHSU) to perform my surgery.

My surgery was on June 23, 2020.  I had Da Vinci robotic surgery and ended up with puncture wounds all over my abdomen. The doctor told me that I was going to hurt for a few days until I could have a bowel movement. They gave me stool softeners and laxatives to help, but my digestive system had shut down because they removed part of my intestines to make a stoma. Once I was able to move my bowels, the pain mostly went away, and boy, was I relieved.

Bladder cancer in a time of COVID-19

Without a doubt, the thing that brought about my biggest fear and anxiety was having to go through this alone.  Due to COVID protocols in place at the hospital, I could not see my two sons or wife. I was trusting strangers with my life, and Dr. Amling, his PA Ashley Olson, and the rest of the medical team did a terrific job. They were wonderfully caring, compassionate, and highly competent. I stayed in the hospital for only four nights.

The stoma surgery recovery required me to do a lot of walking. I noticed I was having back pain, which I later learned was due to a pinched nerve, and I was unable to walk for more than a couple of minutes at a time. This inability to walk for extended times significantly slowed my recovery, as walking is apparently the very most beneficial activity to promote healing post-op.

In and out of the hospital

For the next four months, I was in and out of the ER and the hospital because of urinary tract infections. Every two or three weeks, I would get an infection, my fever would spike to 100 degrees from a normal of 97.5 degrees, and I‘d take antibiotics for 7 to 10 days. After some prodding, I convinced them to do a clean catch of urine through the stoma to determine what was growing in my system.  Unfortunately, the doctor told me that I had hydronephrosis (swelling) in my left kidney caused by a stricture in one of my ureters.  I was treated with antibiotics and they surgically installed a nephrostomy tube. I was supposed to have the tube in for two weeks, but two weeks turned into three months.

At that time, I made an appointment with Dr Amling and his team to see what was going on and that same day he performed a Loopogram, a type of medical imaging. They found that my left ureter was blocked, which prevented my left kidney from properly draining to my stoma and that’s what caused an infection.

“The nightmare would not end”

At that point, it just seemed like this nightmare would not end. The doctors let me know that I had to have yet another surgery, an endoscopy.  I remember the doctor telling me, “Well, we’re going to put you to sleep, and another doctor is going to go in and cut out the stricture in your ureter then re-attach the ureter and you’ll be good to go.” I said, “What if he can’t? What if it doesn’t work?” He then told me, “Well, then we have to do a resection.”

The endoscopy did not work because I had four blockages. Three weeks later, I returned to the hospital for another four-hour surgery. This was major, open surgery and then I needed to begin the recovery process all over again. I was frustrated.  I just wanted to feel better.

Being diagnosed with bladder cancer and the complications I experienced after my surgeries happened during COVID and I was not able to have my family with me. I cried more than I have ever cried in my life. There are still times where I break down, one year later.

My son had bladder cancer too

I was familiar with the disease because my 40-year-old son was diagnosed at a very early age seven years ago, and a female cousin also had bladder cancer.  I guess we’re a family of survivors.

My son Zach was 33 when he was diagnosed. He was working on his Ph.D. at Georgia Tech in a lab where he thinks he was exposed to carcinogens. One day he woke up and noticed he was peeing blood and decided to see his doctor. Because of his age, the doctor told him he was too young to have cancer and chalked it up to being a urinary tract infection and prescribed him antibiotics. Of course, the bleeding did not go away. He was later diagnosed with bladder cancer and received 14 rounds of BCG treatments. He is now seven years free of cancer! Because of Zach’s experience, I had some knowledge of bladder cancer, but I was not prepared to hear those words.

My wife is a trooper. She has been with me every step of the way and I could not have done any of this without her. She’s been my rock.  I am still recovering and taking it one day at a time, and she’s always there for me!

What BCAN means to me

I am grateful to my son for introducing me to BCAN. When he was going through his journey with bladder cancer, Dr. Jonathan Wright at The University of Washington in Seattle was his physician who introduced him to the organization. We participated in the Seattle Walk to End Bladder Cancer, where I met Dr. Wright. After my radical cystectomy, I started to receive BCAN emails, and I saw one about Survivor to Survivor (S2S), a program that connects newly diagnosed bladder cancer patients with trained volunteers who have had similar experiences.  I knew it was something that I would love to do because not only was I helping someone going through this, but it provided me with psychological relief.  I participated in the training and am now an S2S counselor and provide support when needed.  My S2S involvement is not strictly an exercise in altruism for me; it’s also quite cathartic.

I’ve also maintained correspondence with another survivor; Don had the exact same surgery in the same hospital, one week after me.  We found each other through BCAN and have supported each other this past year.  Don and his wife live about 4 hours from me, and as luck would have it, they were camping recently quite near where we live, and so we went and actually met!  Don is my “stomamate buddy,” and we both just celebrated our first “stomaversary” together. I’m very thankful to have Don in my life; he’s the only person I know who can honestly commiserate with and understand me and what I’m going through.

My advice

If I were to offer advice to someone who is on this journey, it would be that you need to find the very best doctor and hospital to care for you. With their support, care, and expertise, you are going to get through this. You are going to get better. It is going to be painful, but you are going to get better. It is also very important that you have people in your corner. Your spouse, family, friends, somebody who will be there for you all the time, not just occasionally when it’s time to go out for drinks. You need somebody with you all that time.  Finally, have a good medical team, advocate for yourself with that team and make sure you pick the physicians you feel comfortable with.