April 27, 2008

Chopsticks

Mary, Brad and I watched the movie "Big" on Friday night. I must have seen this movie fifty times. I still love it every time. The scene that takes place in the FAO Schwarz toy story is one of my favorite parts of the movie. I'm not sure why? Perhaps it's Robert Loggia acting like a little kid with Tom Hanks as they play 'Chopsticks' on the big piano.

On another note, here is yet another example of the irony of what I am going through. As I've mentioned my PSA continues to climb and on June 9th I will begin Chemotherapy as part of a clinical trial. So what does one do when facing events like this? How about play disc golf three days in a row!

On Friday I played nine holes and qualified (along with my friend Gary) to represent our company in the 'Kansas City Corporate Challenge'. The event, is like a corporate Olympics and lasts for several weeks. The men's disc golf event is next Sunday morning.

Saturday, most of the usual gang played and I got a little lesson from young Joe....I added about fifty feet to my average drive! The rest of my game needs a tune up but my drives are looking good!

Even after 5 hours working in the yard yesterday, I played again today with Pete, Joe and Steve. We played at a course I haven't played at since last summer. This course is longer and harder than our usual course but I shot really good on the front nine but two bad holes on the back cost me a good round.

So after that lead in, one that was probably much too long, I recant - after what I am going through with Prostate Cancer, I can't believe I played three days straight AND worked in the yard yesterday? Is this crazy or what? No fatigue, no pain.....no worries!!

And now we reach the point where I wax philosophical.....
We are on the 10th hole yesterday, Steve and I started discussing this one particularly loud sound bird. After locating a stunningly beautiful male Cardinal we further discussed the fact that unlike most birds, the male Cardinal is the more colorful bird.

Big deal right? Then yesterday afternoon, I take a break from mowing the grass and I'm sitting on the back steps and I hear the same song. No sooner do I find the Cardinal when up flies his mate. They sit there for a minute or two and off they fly together.

I wish there was more, but that's the story, just a moment of time from a beautiful spring weekend.

April 24, 2008

Two, two, two posts in One!

First and foremost, here is a treatment update. After researching the proposed clinical trial, Mary and I decided it is worth the potential upside and we are going to participate in the trial. I spoke further with Dr. V only to discover I have to be off Nilandron for at least six weeks. I will stop taking it on Sunday, which will make my first treatment date Monday, June 9th. Treatments will continue once every three weeks for up to twelve treatments (or thirty six weeks). If I am able to stay on schedule, dependent on blood counts maintaining normal range, I will have my final treatment on January 26, 2009 [the day before my 46 birthday!!]

This is going to be a long six weeks leading up to a long nine months. Like everything else we have faced over the past three years, nothing moves fast. The first week of June I'll have a port surgically implanted and will also have follow-up CT and bone scans. Yippee, more radioactive fluid!!!

The anticipated side effects are somewhat standard for chemotherapy; hair loss, neuropathy, loss of appetite, weight gain (from the steroids), fatigue 4-5 days after treatment, nausea and a few more.
None of this concerns me if the outcome is positive. I have my faith, your love, and the hope God instilled in us all. I truly believe we can win this battle before moving on to the next stage.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The next update is in regards to the FLHW Disc Golf Tournament. On the upper left side of this page you will find a picture slide show like the one that I created for the Fall '07 golf tournament. The day was fantastic and thanks to everyone, we were able to raise approximately $2,200 dollars for advanced prostate cancer research.

I especially owe thanks to my friend Gary who crafted this idea and acted as Tournament Director. I also would be remiss if I left out the FLHW Board and my dear friend Pete for his on-going support of FLHW.

At this point, our focus turns to our 4th Annual Golf Tournament to be held Friday, September 26th at Ironhorse Golf Course. We still have a few details to work out. The formal announcement will be coming out in the next week or so.....

April 22, 2008

The Inevitable

After 39 months, the inevitable is finally upon us. After meeting with my Oncologist today and receiving my updated PSA number (38.31) we had "the talk".

I am definitely ready to take the next step and use a more aggressive treatment to try to to get the cancer under control. We have been fairly conservative during the past three years. Even so, we have had great results and I have no regrets on any decision we have made to date.

I am eligible for a clinical trial at the University of Kansas Cancer Center. We are researching it and at this point are favoring this protocol. It would be the standard chemotherapy (Docetaxel plus Prednisone) that I would receive, plus an additional oral medication (Atrasentan) that has shown benefit to other patients with advanced hormone refractory prostate cancer. It is a Phase III trial which is randomized, so I would have a 50% chance of receiving the additional medicine versus a placebo. I will receive the chemotherapy intravenously once every three weeks for 12 sessions, which means I'll finish up in early 2009.

From the things I've read about this protocol it is very well tolerated. Most men continue to work or keep up with most of their daily activities. I plan on being no different. Fatigue usually sets in about 4-5 days post treatment which we plan to schedule so it would coincide with the weekend. So in other words, more movies, more couch time!

Crank up the prayer chain people.....I'm going to need a little help here!!

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Historic Data:
4/21/08 38.31
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)

April 20, 2008

Another Successful FLHW Event









Yesterday we held the first annual FLHW Disc Golf Tournament.
Pictured on the left are the winners, Dave and Arturo who shot 38 in the first round and 39 in the second for a total score of -31!

The picture on the right is of Arturo's winning putt during the closest to the pin contest.
Click on it and in the enlarged version you can see the disc about to land in the chains.

The day started out blustery and in the mid 40's, but by the afternoon round we were in short sleeves and the temperatures climbed well into the 60's.

26 teams participated and helped us raise approximately $2,000 for the Prostate Cancer Foundation.

Again, the kindness of strangers as well as friends and family leaves me somewhat speechless. I owe a big thank you to Pete, Gary, the FLHW Board, the volunteers and everyone who participated in the event.


April 15, 2008

An answer to a previous prayer....

A few weeks ago I wrote about 'Chef Roger', an on-line friend that had passed away
from prostate caner. I had wondered what happened to him?

Well, today another friend Dan J sent me this:

http://www.pcainaz.org/phpBB3/viewtopic.php?f=26&t=1040


and so it appears that Chef Roger made his way home to his family!

April 11, 2008

Do I belong here?

It's been a while since I got a little philosophical. I was thinking the other night, as I was going through the posts of a few of the prostate cancer bulletin boards, "Do I belong here?" I mean, how do I end up here? Then today I looked back through my blog and came across this from April 2005:

The words in that particular blog do not convey my mental attitude at this time. I am such a different person three years later. A lot has evolved with my condition since then. We try hard not to worry, however, as the monthly doctor appointments approach it becomes increasingly difficult. Our next one is scheduled for April 21st.

Florida and Spring Break seem like a lifetime ago, I want to go back and smell the salty sea air, watch the sun set over the ocean and walk in the surf with Mary.

A week from tomorrow is the first annual FLHW Disc Golf Tournament. Details are here. We are probably going to have a few discs left. If so, I'll post the information here, so if you'd like to purchase one, please do - the money goes to a great cause!

Winter won't leave us in Kansas City. Forty-two degrees and possible flurries tomorrow morning. We tee off at 7:30! We can't let a little slow stop us now can we!!!!

April 05, 2008

the grand illusion, my own delusion.....

I found these in my in box. I'm not sure what I was waiting for or why I had not posted.

I like the first better, the second one hits to close to home.

~~~~~~~~~
A Glimpse of Time
12/7/07
A colorful smile,
and I pause for a while.
Thinking, wishing
what will become.

Strangers pass,
not a pause,
perhaps a subtle glance,
as time ticks to it's beat.

Busy, so busy,
a vague breath,
a tapping toe,
a hurried dash.

Life is a snapshot,
a portrait,
a glimpse of time,
that once was.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Self Delusions
12/7/07
I long for a good cry,
a sob,
one that causes,
a gasp, as sigh.

The stream,
covers a cheek,
to taste the salt,
on my tongue like cream.

Personified strength,
an image, no more,
the grand illusion,
my own delusion.....
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

April 03, 2008

Golf Times Two

I love rainy days. Perhaps because I am trying to enjoy every day for what it is; another day!
A cliche' yes, but one worth posting.



I welcome a rainy day like today. We need the rain, it's Springtime. Selfishly speaking, I fertilized the lawn on Tuesday and today's slow steady drizzle is a perfect compliment! Yes, too many rainy days in a row and I would have a much different tone, but not today.

Health wise, I have nothing new to report. I find myself in that 'funk' between appointments. Waiting, wondering what will happen on the 21st. Aches and pains have subsided.

I've been playing nine holes of golf each Wednesday afternoon (the ball variety), and walking the course. It's great to get out, and my game is OK for this early in the season. Yesterday, I shot a 48 including a 10 on a par 5 hole. (I had a little issue with a creek and out of bounds!) If I could have just made that hole a double bogey 7 and I would have shot 45! Oh well, I'm just out there to have fun and improve my game a little this summer, no worries!


Spring continues to tease us here in Kansas City. The forecast is calling for mid to high sixties this weekend.....Saturday morning disc golf is going to be fantastic!