Patient Blog: Sharing My Story of Bladder Cancer to Help Others
This part of my story starts in May of 2012. One day I was pausing for a quick bathroom break at the office. As I finished up at the urinal I looked down to zip up. Floating in the sea of yellow was a lone black spec about the size of a flake of pepper. I thought nothing of it as I thought it must be some debris that had probably fallen off of my jacket. I went on about my business and didn’t think any more of it. A few days later I was again at the same urinal at the office. As I’m finishing up, I look down to zip up and see another lone black speck floating in that sea of yellow. I had my reading glasses on the top of my head so I pulled them down to look closer at this black spec. Upon closer observation, it really was not black. It was dissolving in the water, and as it was dissolving it was really red—blood red. This stopped me in my tracks. I have always been healthy and never really get sick.
After that, I kept looking out for the specs that had me baffled. I did not see them every day and never more than one. I would go 3, maybe 4, days and only see one. Nothing hurt and I didn’t feel any different. I would just see another one every so often. I thought that my pea-sized brain had figured it out finally. It must be that I have a bleeding ulcer. I love spicy foods—spicy Chinese, spicy Mexican, spicy steamed crabs. Little did I know that symptoms for that come out the other end. But, I didn’t know so I kept a check when I ate spicy food, though I did not see the specs after anything spicy.
A week or two passed, and I kept seeing this spec. You see, guys are pretty stubborn, me included. We will pretend that we don’t see something like this and say to ourselves that our body will heal itself and it’s nothing to worry about. NOT! I had that voice in the back of my head telling me to get this checked out. It was really weighing heavy on my shoulders. I did not even tell my wife about this, and it was killing me not telling her. We are also best friends, and we tell each other everything. Since I was 55 at the time, I decided to go to my primary care physician and get a 55,000 mile checkup.
Under the guise of a physical, I would tell the doctor about the specs that I had been seeing. Off to Patient First I went. I told them why I was there and also about these mysterious specs. I had a complete physical, including blood and urine tests. Of course, this day the specs decided to hide. Like always, the doctor reviewed all of the physical test data and I am as always, perfectly fit. He does tell me to keep my eye on the specs. If they continued to show up, he gave me a referral for a urologist. He said it could be that I was passing a kidney stone (even though I did not hurt and I hear they do).
Monitoring Those ‘Fuzzy Specs’
A couple more weeks passed, and wouldn’t you know it, those specs kept tormenting me. Not a lot of them, still just one every 3 or 4 days. I finally fessed up to my wife Amanda after the physical, thinking I was all ok, but now I have to go to see the specialist or I would hear her wrath. I go to see Dr. Seabury at VA Urology and I tell him all of the facts as I know them. He says “Hmmm, could be one of five different things, could be something as easy as passing a kidney stone to worst-case scenario, could be a symptom of some form of cancer. Probably not, so we will start with some tests and work our way from there.”
He gave me another blood test, another urine test, and another “bend over with the rubber glove” test. It was mid-July, so everything has been clicking along at a steady pace. I go back to see Dr. Seabury 1 week later for the results of these initial tests. All look ok, and he recommends a CT scan, and we set that up for the following week.
I went back the following week for the results of the CT scan. The doctor told me that all of my organs looked pretty good . . . except there was a “fuzzy spot down at the bottom of my bladder.” I must have had a befuddled look on my face, because then he tries to draw me a picture of it. He finally took me into his office to see the picture on his computer monitor. He pointed out all of my organs, and just as he had drawn it, a fuzzy spot down at the bottom of my bladder. He said “that should not be there and we need to get it out of there.” Dazed, my brain was somewhere else I guess, and I just said “ok, you know what’s best.” We set up outpatient surgery the following Thursday August 9th. He also said that I needed to have someone with me to drive me home due to the anesthesia. All is good at this point, as all he has called this thing is a “fuzzy spot.”
My wife took me for the cystoscopy. We were going to get that fuzzy spot out, and all went well. I am home that afternoon and the pain meds began to wear off. Did I happen to mention that I thought that I had a high pain threshold? I found out that day it wasn’t as high as I thought. The procedure involves a high-tech tool that really felt like a knitting needle with a lasso on the end of it to snag that fuzzy spot, turned out to be bigger than they thought, so they had to try again with a larger set of tools. Ouch! Being proud of myself, I went back to work the next morning, bragging to my coworkers about how I was not one of those old stubborn guys at all. I was the example of checking it out and “nipping it in the bud.” It didn’t dawn on me what that fuzzy spot could really be. We scheduled a follow-up a week later which I thought was just to make sure that I was ok.
A New Bladder
Amanda and I met up on Friday August 19th at the VA Urology office for our 2:30 appointment to go over the standard follow-up and the formality of seeing what the biopsy report said. Our vacation coincidently was starting later that day at 5:01 pm. We both had Nags Head on our minds. We rented a beach house for the week along with Amanda’s family. And what’s more, I am always fit and healthy. Back at the doctor’s office, Amanda and I were laughing and joking, waiting for Dr. Seabury to join us. He walked in carrying a stack of papers that he laid on the conference room table. He said, “I am not going to beat around the bush on this. What you have is an aggressive form of cancer that has roots, and those roots are growing on the inside wall of your bladder. We need to remove your bladder.”
“Do what?” I looked over at Amanda, and she had tears streaming down both cheeks. Dr. Seabury explained that with the location of the fuzzy spot he does not recommend other treatments or less invasive surgery. He recommends taking out the bladder and either have a stoma and carry a bag or placement of a new bladder.
I had never seen a bladder store or heard of a bladder transplant, so I was a bit perplexed. He explained that once the old bladder is out, they can make me a new one. Turns out that we have about a mile-and-a-half of intestines, and missing about one-and-a-half feet is not a problem. He illustrated this to us using a rolled-up piece of paper as my intestine. He then demonstrated chopping off each end of the roll of paper, sliced it long-ways, then laid it flat and took the opposite corners of the paper pulling them together to make a pouch which would be my new “holding tank,” aka bladder.
That seemed incredible. It did not take me long to choose which of the two options I wanted. I still like to body surf with my two sons in the Nags Head waves, so new bladder it is. Dr. Seabury does not do this high-tech specialized surgery, but one of his associates Dr. Franks does. We went along with this as a starting point and scheduled to meet with Dr. Franks after we returned from vacation. We left the office and walked out into the parking lot, knowing that our life has just been changed forever. We kissed, and I go back to work in a daze; Amanda, went home, devastated.
We decided to continue our plan for vacation, now knowing that I had cancer. I still did not hurt and had no outward signs or symptoms. Those specs sure were messing with me, though. We joked that they were taunting me since the outpatient surgery. Instead of specs they were clumps. So we went on vacation, and that allowed us to come to terms with what was coming up. We utilized that time to come up with our questions, and Amanda typed them into her smartphone.
We had a great vacation and believe it or not, her family treated me like normal and it was not a pity party. It was a time for inner perspective. A time to think about what life is all about. What is my purpose in life? Have I left my footprint anywhere? My life had mostly been about work and seeing how I could take care of how many people at once. Vacation ended, and we returned home and back to work we went. Daily I would ask myself, “why me?” Had I really done that much bad throughout my life, and this was going to be my punishment? I started listening more to Christian music. A lot more. That seemed to help.
The day came to meet with Dr. Franks, so both Amanda and I went, armed with her smartphone full of questions. Dr. Franks described what he would be doing and asked if we had any questions. Amanda asked the series of questions that we had come up with. An hour or so later, he looked over at me and asked me if I had any questions. I looked down thinking for a moment and then looked up and said, “Dr. Franks, it’s been pretty much common knowledge since I was in college that I am rather fond of 12-oz. beverages but only have an 8-oz. bladder, do you think you can make my new one a little bit bigger?” He grinned and said “we will see what we can do.” Surgery was scheduled for September 11.
After the meeting with Dr. Franks and before surgery, we began to tell everyone, now that we had our battle plan. We started with my mom over dinner, then my two sons, and then my dad. I purposely gave them the sugar-coated version of what surgery I was going to have and did not use the dreaded “C” word. I also told work and my extended camper family at Rockahock. I never knew that I had so many people pulling and praying for me, and I am still humbled by that. I also had five or six churches praying for me. I needed all of them, especially my home church. You see, they had the Prayer Team pray over both me and Amanda—not to heal me but to literally evict the cancer out of my body! The weekend before surgery I thought that I was going to just stay intoxicated; instead, I did chores mostly trying to get things “ready.”
Surgery day arrived, and the fact that it was on 9/11 didn’t bother me at all—I just turned up the message on the Christian radio station on the way to the hospital. We arrived and I had decided to not be depressed or mope about this. I went in smiling, laughing, and joking, maybe because I knew that I had so much power behind me, I don’t know. But I was not afraid or scared. I joked with the nurses, I joked with the anesthesiologist saying he looked just like rocker Ted Nugent (He really did!). I do not know about the surgery, but Amanda says something happened at 2:41-2:46 pm that day. Maybe, maybe not, but I think so. I am not the same guy that I was before. I think I got a “do-over,” and I am going to take advantage of it.
The short version of surgery is that the doctor had planned to also take out some lymph nodes, depending on what he saw. If he saw cancer into the first layer he would take out two. If he saw it on two layers, then he would take out all three layers. Incredibly he took none! We were on pins and needles until we heard him read the pathology report a couple of weeks later. Eighteen areas tested and eighteen areas clear.
My hospital stay after surgery was a learning experience. Amanda stayed with me the entire time. She was my rock through it all, continuing with great care even after I got home. Teaching myself how to work that new bladder was a slow process. It had to heal first, and once it did, we had to test it to remove all of the bypass hardware. I went back into the hospital first with a fever and pain. One of the prayer team members, Valerie, visited us in the hospital and told us not to worry that I was healed. Boy was she right on with that. My body ran a fever, rejecting the hardware. My new bladder was ready for use. After 5-and-a-half weeks of recovery time, I went back to work. “Slow and easy and don’t do anything stupid” was my motto. I had set small goals during my recovery time and since.
And everywhere I go, I keep telling my story.
That is it, the purpose of my life, or at least as I see it for now. I was spared to help save others. Remember, guys are sometimes pretty stupid. We forget that early detection can save us. Well, I’m here to help change that. I tell my story to anyone who will listen, and it’s amazing the stories that I hear in response. I guess I’m pretty vocal about bladder cancer. I honestly had never heard of bladder cancer until I had it. But when I was lying in the hospital bed a few days after surgery watching the 6:30 news, Brian Williams announced that “today we lost 1960’s crooner Andy Williams, singer of Moon River. And he died of bladder cancer.”
I was at my campground visiting about 6 weeks after surgery, telling my story to bunches of people, one of whom is my next door neighbor, who said to me, “Rick I want to thank you.” I asked him what for? He went on to tell me that he started having some of the same symptoms 3-4 weeks after I told him my story, and he and he went to his doctor who said he was probably just passing kidney stones. Remembering my story, he asked for a referral to a urologist who tested him and determined that he, too, had bladder cancer. Because he caught it early he only needed outpatient surgery and periodic testing and monitoring.
I know now that God has a plan and purpose for me. I just did not know it before. So much has happened over the last year or so. I am so blessed, and as Big Daddy Weave says, “I am redeemed.” My story continues . . .