My goal in writing my cancer story is that I may give some hope and help to those who contract this disease. I don’t want this to become so long and tedious that I lose my readers; yet, I want to detail all the significant things that went on. What I earnestly hope is that I’ll be able to provide five or even ten year updates.
I guess it began in the 40’s when I started smoking cigarettes. I didn’t stop until 1963 and, by that time, they had done the damage to my bladder. At least, that’s what my uro surgeon said when he told me I had bladder cancer. I couldn’t believe that 25 years after I had quit I still paid the price of my earlier recklessness, but he said it was so.
Let’s go back to 1996—I was 66 and was in good physical shape from playing racquetball and tennis several times a week. I felt great! Once or twice, I saw a drop of blood in my underpants but I naively thought nothing about it. The next time I went for my annual physical, I mentioned it. My GP said, “you should see a urologist”—nothing more. I’m not blaming her, because if I had done that, things would have been a lot better. But I didn’t. I had no clue that it was almost a sure sign of uro trouble.
Then, I began to see blood more frequently. It took almost a year to get me to the uro-fortunately, my wife, Barbara, insisted I finally go. The first dx was superficial tumor in the wall-not bad enough to remove the bladder. When I had the cysto done, however, the news became grim.
The old balloon had five cancers—one in the bladder neck was high grade TC invading into the muscle wall. One, on the left side, was “of high grade”. Another, in the right side wall, was described as “urothelial dysplasia”—I still don’t know the meaning of that except I think it describes very abnormal cells. The final two tumors were carcinoma in situ—both negative for invasion beyond the muscle wall.
My uro in Sarasota wanted me to go with a radical cysto resulting in an external ostomy bag. He mentioned that he used to do the procedure that fashioned an internal pouch but found it subject to infections and leaking so now, he only did the external procedure. Once again, I was fortunate. We were friends with a urological nurse-she told me that Moffitt Cancer Center in Tampa did the internal pouch and I should go there to find out more.
I got an appointment in October, 1996 for a consultation with Jorge Lockhart, chairman of the Urological Department at Moffitt. Dr. Lockhart and his nurse briefed my wife and me on options how the urine could exit, what to expect during the operation, recovery time, impact on sexual activities, etc. We decided on the Florida Pouch, which uses a piece of colon to make a urine-collecting bag. The ureters are implanted into it and it’s drained by inserting a catheter into a stoma, which functions as a valve to the pouch and prevents (excessive) leakage. We decided that day to go ahead with it—we asked for and got the first available surgery time which was early November.
One of my sons came to be with me to drive me to the hospital. We decided to have a good “last meal” on the way which was a BIG mistake-I hadn’t been advised to fast. Maybe it didn’t matter, though—I had to drink the dreaded gallon of Golitely to clear my bowels. I found it so miserable that at one point I told my nurse that I had had it—I wouldn’t drink any more. He said, “OK, I’ll call to cancel the surgery”. I finished the damned stuff.
The next morning, I was taken to the OR area and the anthesiologist placed his “lines” in me—2 or 3 as I recall. My wife and son were allowed to be with me until I was wheeled into the OR. I have never felt so helpless or terrified. All I saw were 10 or 12 masked people-I recognized no one and no one came over to me to identify him/her self. I’m usually not a wimp but I began to cry. The anthesiologist saw this and asked me if I wanted to be put under. I said “yes”.
I came to about 11 hours later in my room-the nurses said it wasn’t necessary to keep me in the recovery room or ICU. I didn’t feel a lot of pain-just woozy and very thirsty and I was shaking uncontrollably. I wasn’t permitted to drink—my son was allowed to wipe a sponge across my lips—big deal. I had 9 tubes in my body; some put stuff in (IV, morphine) but most drained stuff. Worst was the nose tube to keep my stomach empty.
It was impossible to sleep or even get good rest in the hospital, although I was in a private room. Especially in the first few days, my vital signs were taken often and the drainage things emptied. I can’t complain much about the nurses but the aides (most of them) couldn’t care less about the patient’s welfare. I found them to be surprisingly inconsiderate.
My wife asked for a small sofa and she slept beside me in the room for 9 nights. I know it was rough on her but it was wonderful to have her-not just for her presence but for her help. I’d recommend that a family member or close friend stay with the patient as much as possible, at least for the first couple of days.
On day 1 after surgery, I was shown how to cough, using a pillow pressed to my chest. The nurses and some big fella got me out of bed and helped me walk. At the time, it didn’t seem like a great idea to me, but it was good for my morale. The toughest thing was keeping all the tubes and the IV gurney going the same way that I did. Nothing by mouth yet-not even water.
Day 2—I felt surprisingly good. I walked willingly and circled the nurses’ station a couple of times to show off. My button that allowed me to control the morphine was working fine. That is, until later that day. A resident doctor that I had not seen before and whose language I could hardly understand turned me over, saying something about inspecting the spinal line. He fiddled with it enough to screw it up—from then on; I couldn’t get the pain controlled. It took over a day to convince everyone that it wasn’t working. Finally, they found an alternate way to provide the morphine.
Day 3—One of the surgical assistants came and said I was doing great. He asked if I had any bowel activity. I said no but when he listened, he thought he heard “bowel sounds”. He removed the nose tube that drained my stomach and said I could have water and apple juice. The juice never seemed right but I kept drinking it. I could feel a build up in my stomach. Then, the eruption came—I was barely able to wave my wife out of the way before I forcefully expelled the nastiest, black and green bile all over the bed. The nurses hurriedly tried to push a tube into my nose to my stomach again but it kept folding up and not making the bend where it had to. A doctor had to reinsert the tube—by that time, I was a pretty miserable guy.
Day 4—my worst day. I felt a bit depressed and physically weaker. No one came to get me up to walk so I stayed in bed. The next day was the same.
Day 6—finally, there was some bowel activity. The nose tube came out for good. I walked, ate, got my own ice cream from the frig and began to gain strength.
Day 7—we got the fantastic news from the pathology report-except for the bladder and its five tumors, there was no sign of malignancy in the lymph nodes, prostate, ureters, etc.
Day 9—I was discharged with a large drainage tube still residing in the new pouch.
At home, it was a challenge to shower and walk around with the drainage bag, especially as it filled and got heavy. But it was so good to be home—my friends lied poorly when they told me how good I looked. I looked like crap and I knew it. I had lost 16 pounds (10%) and my muscles were loose. My butt just sagged. Barbara’s food tasted heavenly and I slept like Rip Van Winkle.
Five days after leaving the hospital, I went back for removal of the Malecott catheter in the pouch. My sister, Sherry, came for a visit and drove me to Moffitt. There was nothing elegant about its removal—the stitches were clipped and the doc said “hang on-it’s coming out”. He gave a hard yank that felt like a sword going in, but it was over quickly. Nothing was in my body now that didn’t belong.
I began to hit the tennis ball around (easily) a month after the operation and began to play soon after. I lacked strength and stamina but I was doing OK. I wish I could say that my story is over but it wasn’t.
I began to have difficulty breathing in March (about 4 months after surgery). My GP treated me for an infection—when that proved futile, he sent me to a pulmonologist. He treated me for asthma for four weeks, changing puffers and medicine every week. Luckily for me, he finally thought he heard a heart murmur and sent me to a cardiologist. (I think, by that time, my heart was doing more than murmuring in an attempt to work correctly with the injured lungs). Finally, one of them got it right–the cardiologist ordered a perfusion test on my lungs—it revealed lots of clots on both sides. It turned out that I had developed a deep venous thrombosis in my leg and it showered off emboli into the lungs. I was hospitalized for a week and put on coumadin to reduce the clotting property of my blood. I had inflatable stockings during the hospital stay but they didn’t prevent the DVT. My wife feels I didn’t get out of bed and walk enough in the first few days after surgery. I spoke to a friend who underwent a similar procedure in Great Britain-he was put on heparin immediately and experienced no clotting problems. I’d like to know the incidence percentage of DVT’s after major surgery—I’ll bet it’s a significant problem.
The other event I want to describe is an infection of my Florida Pouch that I came down with 3 ½ years after the surgery. Since the pouch is actually a section of colon, it continues to act as colon, manufacturing mucous. Additionally, the pouch has folds and pockets, which are difficult to clean. All in all, this is an excellent environment to encourage bacterial growth. It occurred during flu season and, with the chills and fever and abdominal pains, I thought I had the flu that came, subsided and came again. The third time it flared up, I ran a fever of 102+. When that left for its brief respite, chills had me shaking uncontrollably, even under four blankets. Fortunately, my wife was a lot brighter than I and took me to the ER. A simple urine analysis revealed the problem. After a big dose of an anti-biotic and an IV, I felt fine. To help ward off future attacks, my urologist has prescribed a continuous regimen of an anti-biotic.
Except for those two episodes, I have been extremely fortunate. My surgeon believed he excised all of the tumors and did not feel chemo or radiation therapy necessary. So far, every CT Scan has been negative, urine cytology shows no malignancies, blood tests are normal, etc. The pouch is easy to care for and holds a heck of a lot more than my bladder did.
Blood in the urine is bad news-don’t take it lightly
Get at least two medical opinions before surgery
Gather all the information you can to help decide on the best option for yourself
Try to have someone with you in the hospital after surgery-you’ll get more attentive care
Keep copies of every lab analysis, pathology report, doctor’s notes, etc.
Don’t accept any medication without knowing what it is and what it’s for
Always ask, “what are my options?”
Be alert to changes in your body-don’t assume your elevated temperature is due to a cold or the pain is just muscular—check it out
It’s now June, 2004—I’d like to add another few items to my story. The most important thing I can tell you is that I’m alive and in relatively good shape 7 and ½ years after the surgery to remove my bladder and construct the Florida Pouch. I play tennis four times a week and feel great. If you take anything from this “tale”, I hope it’s optimism that you can have a good, long life even after hearing that you have bladder cancer.
I want to add a very important “lesson learned”. Another blood clot formed in my leg about 3 years ago and again showered off emboli into my lungs, After a stay in the hospital, I was put on coumadin (for life). In my case, the clots have given more problems and presented life-threatening situations much more than the cancers and absence of a bladder. I don’t know if I could have done anything to prevent the DVT’s or if my physicians could have, but I view this as a most serious complication and one that needs to be addressed. The combination of cancer and being immobile for many days can easily lead to DVTs—do everything you can to prevent them and be sure your surgeon does what he/she can.
I recently changed urologists and feel confident in his care. He has me on a maintenance dosage of an antibiotic (Cipro) to guard against another pouch infection. I see him every 6 months and get an IVP, cytology test on urine from my pouch and a FISH test.
I hope I can provide another good update in a few years. I’ll continue to participate in the Café—I’d like to acknowledge the help I’ve gotten from everyone, particularly Wendy, Crilly, Karen and, especially, Roni Olsen.
I submitted a little doggerel, “A Toast to BC Warriors” some years ago and many seemed to get a kick from it. I’d like to add it to my Trench Tale as a tribute to all of you who are fighting the battle.
A Toast To BC Warriors
I offer a toast to the gallant group
Of BC warriors, here’s my salute
We’ve taken the blows of the big, bad “C”
Gone through surgery and BCG
Nasty chemo, cat scans, fevers and chills
And, as Karen calls them, “frozen duck bills”.
Wendy’s Web Café is a wonderful source
Of caring support and info, of course.
We offer suggestions and heartfelt caring
“Mucus is forever”, well, thank you for sharing
We have no secrets, we tell every tale,
“My vagina was shortened”, “my sex life curtailed”,
“Wow, my penile implant worked wonders for me
I wanted an hour but it ended up three!”
Are you sick, nauseated? try smoking some pot,
It should stop the heaves and you’ll like it a lot.
How do you pee? Does it come from a bag?
Is it inside or outside? Is leakage a drag?
Is your uro a good one? Does he/she take time?
Do you take herbs? Know about enzymes?
What can we do to boost our immunity?
So many choices, it drives us to lunacy
Our trench tales provide a dramatic view
Of fantastic stories about me, about you,
Eventually though, we handle the strife
We make our decision, take command of our life
We’re hanging in there; we’ll fight to the end
So, here’s to you, warriors, my people, my friends.