After a week in Florida (pictures and a full report later) I had my monthly appointment this morning and there were a number of changes:
1) First we switched to a doctor at the University of Kansas Cancer Center.
Dr. V specializes in prostate cancer. We have met with him a couple of times previously for second opinions. He has a compassionate approach and is dedicated to supporting patients with genitourinary cancers.
2) The KU Med Cancer Center just opened in it’s current location about 6 months ago. It is fantastic. It is a state of the art facility that was definitely designed to provide the patient with a privacy and comfort during treatment. The staff was consistently polite and compassionate.
In the waiting room there is a lady with a cart and provides free bottled water, juice, etc. The refreshments were offered with a smile and a warm greeting while we waited to see the doctor.
Doesn’t sound like much, but it really was a great touch.
3) Because the lab and the treatment room are in the same facility, when they inserted the
temporary port in my hand, they drew blood for all the tests at the same time. Again, not
a big deal, a small touch but it goes a long way.
4) The treatment room or should I say rooms. These are laid out like cubicles in an office environment. No more big room with 15 chairs and 15 patients. Each room has a flat panel TV, DVD player, a door that closes providing privacy. This is going to be real important in the future when I have chemo, now it’s just a good addition to the monthly visit.
5) One of the most important benefits for Mary and I – we received the PSA results before I left the appointment! No more waiting for days and placing multiple calls back to the doctor’s office.
Now for the bad news, my PSA went up a little bit from 29.4 last month to 34.7 this month.
A few factors that we believe may have contributed:
– I was on vacation and was out of routine; no daily work outs, lots of eating out, etc.
– The week proceeding vacation was perhaps one of the most stressful I have had at
work in years
– The week proceeding vacation, I was also working 4+ hours a night on a volunteer project for our church and therefore sleeping less, etc.
Dr. V, Mary and I decided we will continue the current regimen of Lupron and Nilandron to give the Nilandron a fair opportunity to get the PSA under control. Hopefully, over the next 4 weeks we will resume a better sense of normalcy and routine. I will be back to working out tomorrow morning.
Not much else to share right now, that’s my story….and I’m sticking to it!!
Historic Data:
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)
Having returned from Florida last night that last thing I expected in my inbox was news like this,
on Thursday we lost another PCa brother.
Wes Witcher, 46, of Marshall, MO lost his battle with PCa, my thoughts and prayers go out to his family and friends. His obituary is here:
http://www.campbell-lewis.com/sitemaker/sites/campbe0/obit.cgi?user=wes-witcher#
Wes found my blog and contacted me a number of times last year, he was pretty well advanced when initially diagnosed. It’s sad news to wake up to on Easter morning.
Damn this disease.
I just finished reading “The Kite Runner“. Have you read it?
This was the first time in my lifetime that a book made me cry. Seriously! Perhaps it’s
the hormonal imbalance? Maybe the flood of emotions in other areas of my life?
What ever it was, I cannot say enough about this book. It was fantastic!
I just saw they made it into a movie…..it will be realesed to DVD next week, not counting on much but I will probaby rent it.
Why does Hollywood think they can translate every good book into a movie? It rarely works.
I’m not a book reviewer so I’m not going to add comments like “SPELLBINDING”, “CAPTIVATING”, “A MUST READ”…
If you like to read and are looking for a unique, heart warming and heart wrenching story, this is well worth your time.
From the time I was 15 until I was 19 or 20 I worked in a restaurant call “PJ’s Food and Drink”.
Thirty years later, the memories of that place are fresh in my mind. The original location was on Manchester Road in Des Peres, MO. but it is long gone. It re-opened in a new location a number of years ago in downtown Kirkwood.
The photo above was sent to me from my ex-brother-in-law, Bruce (he is in the photo, on the left). The handsome devil on the right is yours truly (click on the photo for a larger view). I would guess I weighed in at about 120 pound in those days. Skinny, but what a handsome fellow, no?
The things we did back then, cars, motorcycles, girls, beer, the list goes on and on. There crew included Airhead, Hoppy, Steve (aka X), a bartender named Curley (female), PJ himself, his brother Urban, and both my brothers.. Mom and Dad came in most Saturday nights.
Thanks for the flashback Bruce, those were the days indeed.
There is a man named Ric Masten. He has suffered with advanced PC for 10 years now. A link to his website is on the left. His blog is one of the first that I found after my diagnosis.
Has winter got you down? Me too!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You are late
2-26-08
Where have you gone?
Patiently, anxiously, I wait,
for your arrival.
Unlike years past,
your teases and
days of temptation
have been lacking this year.
The days drag on,
cold, damp, dreary.
I long for you,
but you are late.
When will you come?
When will you temp me
with warm breezes,
the scent of hyacinth,
and green, green grasses.
Another month has passed. Another doctor appointment, another blood draw, another shot of Lupron, another infusion of Zometa and another lunch with my wife.
As boring and repetitive as the medical portion of these monthly sojourns may sound, there is one portion of the day that repeats it self each month which is something that I absolutely love. You see, Mary and I always have lunch when we are through. We always go to the Blue Koi. We always split an order of steamed chicken dumplings and an order of black bean chicken.
Long ago we stopped looking at the menu, it was just time wasted. We talk, we eat, we laugh and eventually, I go back to work.
It’s the simple things……
I no sooner clicked the Send button to post this entry and the phone rang with Dr. H on the other end. The current PSA level is 29.4 (Down from 36.2 on January 28th).
Thank you for your continued thoughts and prayers!!!!!
I guess you could say I’ve been a little busy and a little distracted?
2-18-08
Sound familiar? My three year anniversary came and went and I just let it slide!
Wow, so much has happened in the last three years. I am not sure where to begin? What to include?
Instead of looking back, I’ll look forward…maybe three years or so:
2011
– Mary and I will celebrate our 20th wedding anniversary
– Brad will turn 15 (that’s a frightening thought, driving, girls, Wow!)
– My 30th high school reunion
– My dad will turn 80
– I’ll have survived 6 years with this damn disease
It’s a little late, and I’m struggling for words tonight.
So here’s to three years down and many, many more ahead!
So, it’s back to the music.
I spent the weekend taking every CD we own and copying them to my iPOd. I now have 5,096 songs (46 + plus days of continuous music!).
Out of all those choices, I’m here at work listening while writing up a requirements document.
What comes on is “Long Trip Alone” by Dierks Bentley.
And so I quote:
So maybe you could walk with me a while
Maybe I could rest beneath your smile
Maybe I could feel right beside you ’til I’m home
‘Cause it’s a long trip alone
It’s such a beautiful song.
~~~~~~~~~~~~~~~
“Of her”
2-19-08
I think of her,
and I cry a little tear.
Man how I hate this…
I want it back,
my life without it,
my life with her.
