Eleven Years With Bladder Cancer
This account will not be filled with medical terms. It is more of a learning
experience, and getting accustomed to doing things you never thought you
would have to do. Therefore it’s a lifestyle change that is forced upon you.
My background, retired navy, college, and for the last twenty years in a
fast moving textile business has kept me in tune with what change means.
Change was normal for me. I’d like to think that being a change agent has
helped me make the transition from a life without cancer to a life with it.
In 1988 while on a trip, I stopped to go to the bathroom. To my surprise
my urine was full of blood. And further, some “pieces” had also came out. It
was shocking but, I decided to wait to see if any further show would appear.
None did.
I therefore talked myself out of it for further worry. Later, about 6-8
months, I went in for a regular physical. My Dr., asked have you ever had
blood in your urine?? Reluctantly, (it was only once, months ago) I admitted
I had once. But not since then. He said you need to see a Urologist for a
check up. I was set up for x-rays, and an appointment. The x-rays were
given to me to take to the Urologist. I decided to check them out in my
living room. When I found what I thought was my bladder cavity, it had a
dark shadow covering about 60-70% of it. I surmised that was not normal.
At the Urologist, we set up for my first cysto. When in the examining room,
I decided that I would find what ever instrument they were going to use to
examine me. When I found it, I started to perspire. In fact by the time the
Dr. came in I knew I was not going to let him do it. As he knew I was going
to surgery anyway he took it well and let me off the hook. The x-rays did
tell all anyway. So I was set up for surgery. I went home thinking that
nothing would happen until surgery. Wrong..
Several days before my scheduled surgery, while visiting, I started to have
the bloody show of the century. Very heavy, very thick. After returning home
I continued to have a flow of blood. I called the Dr., trying to explain the
problem, he finally said O.K. meet me at the hospital. He inserted a
catheter and sure enough, I had lots of blood. The Dr. moved my surgery to
the next morning. During the night my tube clogged up and had to be
changed, to a larger one. That was an experience from hell. The night nurse
having little technique, but lots of strength accomplished her mission with
lots of screaming from me.(If you are aware of the proper procedure you get
hurt less).
After surgery, and a few days wait for the biopsy, I got the news. Your
tumor was cancerous. There would obviously be follow up required for
sometime. For the next two years, almost every cysto was a call for
additional in the bladder surgery, with some biopsy’s from time to time. My
biopsy’s were and are low grade non evasive. But the re-occurrences were
just like clock work. I then went into my first course of BCG. The first
application did act as if it cleaned my bladder out for I had a lot of
residue, after that, nothing. Again we went back to the cysto’s and
re-occurrences. I went through a second course of BCG. No reaction that was
visible. And back to cysto’s and re-occurrences. We then decided to use the
HIGH PRICED STUFF(mitomycin). Again no noticeable change.. By now I am
about five years in this process. It was time for some more x-rays. On the
film there appeared to be a spot in the ureter close to the left kidney. To
confirm this, a sonogram was performed. It confirmed the spot. My Dr.
trying very hard at this time and I am sure seeing my disappointment after
all this therapies had failed, decided to try to remove the spot in the
ureter with a laser. He contacted a San Francisco manufacturer of lasers and
one was brought down which was very small. With their Dr. looking on it was
again not successful. (But I see this as a very good possibility in the
future.)
Now I was in for the loss of my left kidney. There was no way to cut the bad
ureter part out and re-attach. So goodbye old friend. Note: during almost
any bladder surgery that I have had, one common complaint was the spasms
after surgery.
Similar to hot flashes, with the overwhelming need to urinate. When the
work had been done in the ureter, a stint was inserted
To insure the ureter would not close up. This devise hangs down in the
bladder and is very uncomfortable and adds to the spasms problem. During
kidney removal this spasm effect intensified many times. Even with a
catheter and other tubes for draining it was impossible to compensate for,
for 2-3 days. Ended up being the worst part of the kidney removal. As you
can see, we start out with bladder cancer and are now up to a kidney
removal.
Things start all over again, more cysto’s and more bladder work to remove
usually small growths. At times we use the laser and other times we use the
conventional knife. And again we biopsy. During the times of the biopsy’s I
usually have to wear a catheter for a week due to the clotting and extra
blood.
How do I feel now.?? Actually I feel o.k. except for some additional
anxiety. My latest hospital visits have included increased anxiety. I’m
planing for it now by having the anesthetist give me something prior to
recovery. At this time I’m doing
spinal block’s and make them put me to sleep as well. That works best for
me. My concern now is how many more surgeries can I take.. Because you all
know the bladder isn’t going until they pry it out of my hands. I also try
not to get to caught up with medical terms and procedures, except for what I
really need to know. Have I made any mistakes??? I try to hard to return to
normal. It just takes longer than I want to accept. It is probably the
reason why my anxiety level has increased. I do trust my Dr. for we have had
a similar backgrounds both retired from the navy, and it has helped to have
a more friendly relationship, like we are a team. I do make him slow down at
times so that I can catch up ..They will talk around you. I have talked to
other Dr.’s and explained my progress, and have been rewarded with the
opinion that we seem to be on the right track. My general attitude has been,
I agonize about it during the surgery period then forget until next cysto.
My life has been fairly normal except for the cysto’s and surgery. The last
thing is, there are other Dr.’s that may have taken the bladder out (or
wanted to), but, I have showed him my distaste for that early on and we have
stayed away from that as an option am very strong willed, and feel that I’m
not being lead to make any decisions I do not want.
If I can help any one, please don’t hesitate to e-mail me at
rparker@gfd.com
HANG IN THERE….
