John
Grover and Beth live in Georgia, USA. He was 47 when he was diagnosed on March
4, 2008. His initial PSA was 5.0 ng/ml, his Gleason Score was 6 and he was staged
T1c. His choice of treatment was Robotic Laparoscopic Prostatectomy. Here is his
story.
March 4, '08 It is 6:30 AM the day after I found out I have prostate
cancer. I did not sleep well if at all. I'm a little bit in shock, and what it
feels like is "not too bad". My wife and the doctor are the only ones who know
at this point.
The next step is big--which is to find out if it has spread
or not. Either way I am facing surgery (robotic laparoscopic prostatectomy is
my choice) and that will be tough. If it has not spread I will be in good shape
and have a regular life expectancy. Suffice to say it is a bit of a freak out.
Mental
activity is good. It keeps me from thinking about it too much. Work helps too.
Physically,
my prostate feels swollen. It must be either psychosomatic or just that I'm aware
of it now. Before I knew, I did not feel it. Nothing physical has happened to
me since I found out so it is a weird feeling.
Tomorrow is the testing
to see if the cancer has spread. Worried, but hopeful. After all there was a third
of the prostate tissue samples with no cancer. Now I just have to wait it out.
If no spreading has occurred then the situation is great. If spreading has occurred
then a new life will have to begin. It is in my mind but I am focused on good
results. Today is another beautiful day. I want to be outside in it.
Writing
now from two weeks later. The initial tests turned up negative (good) for no spreading.
That was a very happy evening. Meeting with the surgeon next Thursday. I need
to make up my questions. I have almost no worry about the surgery itself. 2 big
worries: IMPOTENCE and INCONTINENCE.
March 30, '08 Things are not so clean
as hearing that the initial tests turn out. For others I would advise ask three
times: the results of all tests appear negative? The nervousness and panic feelings
that occur from not feeling certain are not good. Physically I feel strong but
the mental takes a toll. I had tightness in my throat again. Checked in the mirror
and saw a long white bump. I had a very bad night fearing throat cancer. Dr. Dey
the next morning said it is most likely throat infection and gave me antibiotics.
Down then up. Nothing is changed but my own mind. Beware the mind games this will
cause you. Be calm and take it as it comes.
Met with the surgeon. I like
him. He was clear about the good and the not so good. The not so good amounted
to the fact that the disease had spread to both sides of the prostate. He cleared
up the 2/3 of samples with cancer by saying the range of cell spread within the
samples was 1% to 25%. That felt a bit better. The good is that if the disease
has not spread I have a virtual 100% chance of CURE. We are now scheduled for
May 8 surgery.
One slightly worrisome thing was a slight dark spot on my
middle spine from the Bone Scan. The Doctor says it looks like nothing to worry
about most probably, and should not deter me from getting surgery. I don't think
anything could deter me at this point. I want the thing and its ugly disease out
of me. After the surgery we are not in the clear until we get the PSA tests back.
We are aiming for 0 PSA. Even though the PSA test is not perfect at detecting
cancer, the Doctor explained that prostate cancer is always prostate cancer no
matter where it lives. Hence, for the rest of my life I will be getting PSA tests.
Any registration above the lowest level is a sign that cells may have spread.
This last week I went to a counsellor. It was a benign and pleasant experience,
but I'm not sure I get much out of it. We might have to do some more digging and
talking to get to the root of my anxiety in general. I'm sleeping pretty well
now, as long as I can calm my mind. The family now knows the situation. I have
kept most of my worries to myself and have tried to present the positive. I actually
feel positive. One of the things about cancer though...just think about why you
fear it. The nature of it is that it spreads and grows and takes over your vital
functions. So when you hear you have prostate cancer, or any other cancer I would
imagine, the fear is the spread. The fear of cancer is of its spread.
I
am in great shape. Best shape of my life since college. I was training for a trip
to Peru to hike the Inca Trail before I got the diagnosis. The docs told me to
take the trip and it was great to have that to focus on rather than dread the
process of the disease. The week before surgery I hit the weights and aerobic
hard. Minimum of 45 minutes on the elliptical trainer and 8-12 exercises on the
weights. This is very good and mentally positive and empowering.
Pre-Op
check in day May 2 2008. Dr Miller and his staff are great. A bargain even though
I'm paying mostly out of pocket for the procedure. You think about it and it almost
seems cheap! They run me through the regular tests. No big deal.
Surgery
day. Arrive 5AM at the hospital. A bit dry and hungry (no food the day before
and no liquid after midnight). I'm in a hospital gown, and they give me a feel
good pill and an antibiotic. Roll me in to surgery. What a clean amazing high
tech place. The robot is cool looking as is Dr. Miller's station. I don't see
the Doctor, but all the nurses and anaesthesiologists are setting up. I get plugged
into the drip for the anaesthesia ... and I'm out.
I awake and feel dull.
Weird to be coming up to the noises of the activity. I don't FEEL the pain but
it must be there. I am shaking and twitching a bit. Doc shows up and says he'll
talk to me later...all went well and looked normal....when I'm less loopy. They
wheel me to the outpatient rooms. I would say there is significant discomfort
for an hour then more morphine and back to sleep. The pain is not sharp or horrible,
more like it is a shock sensation or slightly numbed distant pain. I rate it a
5-6 out of 10 for the nurse before I get the morphine. It is about 11:00 AM day
of surgery.
4 PM first attempt at walking! I get upright, but the world
closes in on me and I almost faint. I sit back down quickly. Extreme aching arrives
in the shoulders (from the gas?) This dissipates relatively quickly after laying
back down.
More rest. A little bit to drink and eat consisting of crackers
and water. So good. Lunch or dinner consists of warm broth. So good. It is not
that I'm hungry; my appetite is not strong. The food feels good though. More snoozing
and sleeping Around 11 PM make a good attempt at walking. I actually make it down
the hall. I'm holding the wall rail on one side and the IV stand on the other,
but I make it fine. Shoulders still sore upon getting up and they stay that way
until I lay back down and rest awhile.
I get another final dose of morphine
for sleep. Still wake up at around 2 AM and lay there looking at the ceiling.
Laying still is absolutely no problem. I think that there is little if any pain
then. The daffy and absent minded night nurse wants me to roll on my side every
few hours though and that hurts a bit. I basically just grab the bed rail and
pull myself up and over and hold the rail for a while. Around 4 or 5 AM I do 3
rounds of the halls. Nothing to hold onto! Think of the progress....
After
breakfast we have another nurse. Crazy busybody Nurse. She's all over it but boy
I'm glad I'm not married to her! She trains us on the catheter quickly and I'm
placed in a wheelchair and wheeled out. The wheelchair ride is not a great feeling
nor is the ride home. My sit spot groin area is sore. I wonder why. Back home
with excellent nurse wife.
One week at home. 2,000 fiction pages and short
walks down the hall every hour. I experience an erection with the catheter in...not
that I could do anything with it, but I am most pleased with that result!
After
one week the catheter comes out. I have to wear 'male guards' or pads because
there is a little urine leaking. The doctor told me the pathology was good, and
the margins were clear. The final test in 4-6 weeks will be the first PSA. Hoping
for 0.
I'm also told to begin attempting sexual activity as soon as possible.
Sexual activity is possible, and orgasms and erections feel almost normal.
It is a bit worrisome and fragile but everything is working fine. The third day
in a row there is a sharp pain when I get an erection just behind my testicles.
I continue but decide to take a day off :-) I'm using Levitra every other day,
but even though it helps firm things up a bit, I'm happy to say that all is mostly
normal there.
A week after the catheter came out, I am leaking urine quite
heavily. Using 3 pads a day or so. It is uncomfortable, but I'm thankful for my
general condition. I have been walking every day. No weight training yet. I feel
that I am on the real road to recovery. Life is almost back to normal.
John's
e-mail address is: john@groverstudio.com
