It's not been a very good March in my world, the world of my prostate cancer brethren.
I posted about Wes the other day, now today there is news about "Chef" Roger Woods. I'll describe Roger as he did himself; an old hippy dude that lived "off the grid". Translation; he lived in an old RV in southern California and Northern Arizona and got by on Social Security, Medicare, the occasional cigar and bottle of "Two Buck Chuck" and of course the kindness of friends and strangers. He was diagnosed last summer, July I believe, and he left this world over the weekend. He wrote some of the best posts, simple and to the point.
Roger, who was two hours short of his 70th birthday is now just another in a long list of examples of the diversity of this dreadful disease. Old, young, rich, poor, urban, rural, connected, 'off the grid'. Prostate Cancer had no enemies, this cancer has never found a prostate it doesn't like.
The last we heard from Roger he was leaving the desert and driving across country to see his sister in Baltimore and to try find a new doctor, and perhaps another treatment. I wonder if he made it?
If you care to read more, here are a few links:
http://rogerwoods.bravehost.com/
http://www.yananow.net/Mentors/RogerW.htm
Finally, send your prayers for a quick and full recovery to KN, who had PC surgery today.
March 31, 2008
March 30, 2008
Ice Bowl Video
Here is a link to a video that captures some of the highlights of the Ice Bowl.
The folks at the Kansas City Flying Disc Golf Club (www.kcfdc.org) and the generous player throughout the area helped raise over $1300 for our foundation.
Enjoy the video, look for the FLHW banner in a number of places!!! Also, appearing my friends Rob, Jud (in the background).
The folks at the Kansas City Flying Disc Golf Club (www.kcfdc.org) and the generous player throughout the area helped raise over $1300 for our foundation.
Enjoy the video, look for the FLHW banner in a number of places!!! Also, appearing my friends Rob, Jud (in the background).
March 26, 2008
Sunsets are like snowflakes....
....no two are the same.
(the picture was taken with my cellphone!)
(the picture was taken with my cellphone!)
This is from the last night in Anna Maria Island. We had sunsets equally as beautiful every night but one, when it was foggy.
Seafood, sand, surf, seashells, sandcastles and of course sunsets. At times, I almost forgot I was dealing with advanced prostate cancer....isn't that what vacations are for?
More details and pictures later....
March 24, 2008
Back to reality......
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)
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)
March 23, 2008
Somber Easter News
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.
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.
March 20, 2008
Looking for a good book?
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.
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.
March 15, 2008
On another note....
I know, it's been awhile. I was just prompted this morning with an email from a total stranger, making sure I was OK. I am.
Work has been incredibly busy. Meeting after meeting after meeting. There was a day last week when I left the house at 7:00am and did not get back to my desk until 2:15. After barely looking at email for 30 minutes, I had another meeting with my Director and then I was off to my golf league.
When 'the other David' and I signed up for this back in January it sounded like a great idea. Leave an hour early each Wednesday, play nine holes, meet some new people.
Finding the time is going to be killer, enjoying it will not. So leagues began this week and the weather was fully cooperative. 70 degrees but a bit breezy, however, no complaints! Running behind I had no time to warm up or go to the driving range. I won't give you a shot by shot narrative but my first shot found the sand......as did my second! I found myself on the back fringe facing a tricky, downhill putt to save bogey. Not wanting to run it by the cup, I barley stroked it but it kept rolling and rolling and finally stopped.....IN THE HOLE! Some of you may not be too proud of a bogey, I'm about an 18 handicap and to start the first hole of the year in this fashion was just what I needed. In the end we accomplished our goal for the year, we had fun, I had a few more good holes (and a few bad) but it was a wonderful start.
To finish the day, I got home at 7:30, quickly ate dinner and attempted to finish compiling the catalog for our church auction. This is another reason I have been lax in keeping up the blog. I spent at least four hours a night for 7-8 days working on this masterpiece. Wednesday I was up past midnight, by Thursday I was wiped out. If you are interested, click on "Auction Booklet" on this page.
So if you are wondering.....this is what I've been up too!
Health wise, nothing to report - I was having some leg pain last week, nothing a few Advil did not take care of...otherwise looking forward to my next check up on the 24th.
On another note:
Mary's Birthday is today. I got her a 'shopping spree" and a few other items. A fabulous dinner is in store as well. After all, she puts up with me and she deserves it.....and more!
Spring Break is coming up and we are off to Florida in a few weeks. As you may infer, I need a break from work anyway! I really like what I am doing, the people, etc, just need a break and a re-charge!
Work has been incredibly busy. Meeting after meeting after meeting. There was a day last week when I left the house at 7:00am and did not get back to my desk until 2:15. After barely looking at email for 30 minutes, I had another meeting with my Director and then I was off to my golf league.
When 'the other David' and I signed up for this back in January it sounded like a great idea. Leave an hour early each Wednesday, play nine holes, meet some new people.
Finding the time is going to be killer, enjoying it will not. So leagues began this week and the weather was fully cooperative. 70 degrees but a bit breezy, however, no complaints! Running behind I had no time to warm up or go to the driving range. I won't give you a shot by shot narrative but my first shot found the sand......as did my second! I found myself on the back fringe facing a tricky, downhill putt to save bogey. Not wanting to run it by the cup, I barley stroked it but it kept rolling and rolling and finally stopped.....IN THE HOLE! Some of you may not be too proud of a bogey, I'm about an 18 handicap and to start the first hole of the year in this fashion was just what I needed. In the end we accomplished our goal for the year, we had fun, I had a few more good holes (and a few bad) but it was a wonderful start.
To finish the day, I got home at 7:30, quickly ate dinner and attempted to finish compiling the catalog for our church auction. This is another reason I have been lax in keeping up the blog. I spent at least four hours a night for 7-8 days working on this masterpiece. Wednesday I was up past midnight, by Thursday I was wiped out. If you are interested, click on "Auction Booklet" on this page.
So if you are wondering.....this is what I've been up too!
Health wise, nothing to report - I was having some leg pain last week, nothing a few Advil did not take care of...otherwise looking forward to my next check up on the 24th.
On another note:
Mary's Birthday is today. I got her a 'shopping spree" and a few other items. A fabulous dinner is in store as well. After all, she puts up with me and she deserves it.....and more!
Spring Break is coming up and we are off to Florida in a few weeks. As you may infer, I need a break from work anyway! I really like what I am doing, the people, etc, just need a break and a re-charge!
March 04, 2008
Flashback.....
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.
March 03, 2008
Ric Masten
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.
He is a poet, skilled well beyond my silly little verses.
Ric is not doing so well. I ask that you take a moment and add a little prayer for him and his family.
A few weeks ago we traded emails about his poem "On the Mountain".
You can read it here, for those that know me well, you might guess what we talked about.
I am really sad right now.....CANCER SUCKS
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