Merry Christmas, Happy New Year and 300!

This might be my last entry for 2007, perhaps.

Tomorrow I am out of the office for an all day meeting. Then I will be on vacation until January 3rd.

So much time, so little to do.

First and foremost, Merry Christmas to all of you. Enjoy the time with your families. Take real time away from work. Recharge you batteries. Just get away (if not physically, atleast mentally!).

With this post, number 300 in my continuing saga, we turn into a new year. It seems like yesterday, December of 2005, that Mary and I spent the holiday season, all of January and the first half of February stressed out. Stressed as you can only imagine. Those days are long behind us. Not that life is stress free, it's just different. We have accepted the diagnosis of Prostate Cancer. It is what it is.

On the 31st I'll have another blood test, and we'll anxiously await the results and deal with things thereafter. The monthly emotional roller coaster ride begins again. 2008 may bring changes in test results, although things could remain the same, (we pray that they will), however, it is likely to change. I thank God for 2007, it turned out to be one heck of a year.

Prostate Cancer has changed me, the people I have met have changed me. I have gotten to know friends and family members better, that has changed me. Some changes are subtle, others more pronounced and in some ways remarkable. Funny how that works.

So in closing, find the time to light a fire, snuggle up with your loved ones, turn on "It's a Wonderful Life" and cry like I always do when ZuZu says "Look Daddy, teachers says every time a bell rings an angel gets their wings!"

That's right, that's right.

Another passing.....

Dan Fogelberg, a popular singer/songwriter of the '70s and '80s, died Sunday, at home in Maine at the age 56. He had battled advanced prostate cancer since being diagnosed in 2004.

I was never a huge fan, although I did like most of his music. My favorite song was his most popular, "Leader of the Band", which was a a tribute to his father.

"Leader Of The Band" - Dan Fogelberg
An only child alone and wild, a cabinet-maker's son
His hands were meant for different work and his heart was known to none
He left his home and went his lone and solitary way
He gave to me a gift I know I never can repay

A quiet man of music, denied a simpler fate
He tried to be a soldier once, but his music wouldn't wait
He earned his love through discipline, a thund'ring velvet hand
His gentle means of sculpting souls took me years to understand

The leader of the band is tired & his eyes are growing old
But his blood runs thru my instrument & his song is in my soul
My life has been a poor attempt to imitate the man
I'm just a living legacy to the leader of the band

My brother's lives were different, for they heard another call
One went to Chicago, another to St. Paul
And I'm in Colorado when I'm not in some motel
Living out this life I chose and have come to know so well

I thank you for the music and your stories of the road
I thank you for the freedom when it came my time to go
I thank you for the kindness and the times when you got tough
And, Papa, I don't think I've said "I love you" near enough

It snowed last night....

It snowed last night,
it snowed last night,
the snow bears had,
a pillow fight.

It has been over 30 years since grade school, when I sang that song.I am not sure what brought it to mind?

Perhaps it was our weekly game of disc golf yesterday?
22 degrees, 2 inches of snow on the ground and more falling as we played. It was a beautiful morning. The five of us, pretty much the nucleus of the Saturday morning gang, tromped and sloshed our way through the woods. I may have mentioned it here before, but if you've never been in the woods during a snow fall, I highly recommend that find an opportunity to do so. I can't explain it, but it is truly a beautiful experience.

The rest of weekend was filled with a basketball game, a Christmas party, addressing Christmas cards, wrapping presents and getting ready for the holiday week. Tis the season!

No more colors

The family and I watched a wonderful TV movie last night, "Pictures of Hollis Woods", a Hallmark Hall of Fame production. For as many times as I complain about the garbage on TV, this was a beautiful story. There is nothing that can be compared to lounging on the sofa and crying with your family (the good kind of crying). It's available on DVD, I'd recommend it to all.

I spent last week at a training class in Atlanta. It was without doubt, the best training class I have ever participated in. I left with a different perspective on communication, body language and getting a message across to a group. I could go on and on, but will just end it there.

However, on my way to Atlanta, my mind was obviously in a far different place as reflected in this poem. Please don't read anything into this - I'm fine, feeling fine, looking marvelous (a joke, a Billy Crystal reference)....

~~~~~~~~~~~~~~~~~~~~~~~~~~
No More Colors
(12/4/07)

What if your life changed,
things you loved,
and perhaps at times,
took for granted,
suddenly meant nothing?

What if just living,
breathing, getting through
another grey day, was
as much as you could,
find strength for?

What if the sun set,
on everything you knew,
and cherished,
Only to rise the next day,
without color,
without the brilliance or colors of God?

A life of cloud covered sky's,
one without color,
without the beauty you
had come to accept as truth,
What if your eyes only saw black, white and grey?

Read 'em and Weep!

There are a number of reasons for the title of today's blog. The last 24 hours have been, as I've described in the past, that part of my journey, my roller coaster ride, that I can reflect on and enjoy. I'm on an 'up'!!

First and most importantly my PSA number this month: 21.9

I'm trying to type and pray at the same time! Thank You God for giving me good news as we approach Christmas. I was not sure how Mary and I would have dealt with bad news hanging over our heads during the holidays? Obviously, we would like the number to be much lower, but at least it is not doubling, tripling, etc. As Dr. H would say, the change is statistically insignificant, which equates to a stable condition. I am grateful that I continue to feel good and that we don't have to worry about it this year!!

Number two, the 'Jimmy V' video is on ESPN right now.

Another reason is last night we held another Texas Hold 'em Poker event. We had a great time as you can see from the picture. Kyle (right) took home the first place prize, Bruce (far left) was second and my long time friend Steve took third. Due to the success of the event we will be making another $1,000 donation to the Prostate Cancer Foundation. It will be matched for a total of $2,000!! A large thank you goes out to everyone who played and contributed to the night's success!

Finally, I add this note with a bit of trepidation, however I feel I need to include the information. There is a wonderful, very spiritual woman at our Church that is facing her own cancer battle right now. She will start chemo soon and I would like to ask you to say a prayer for her, as she fights this devil, cancer.

I saw her and briefly spoke with her Saturday after Mass. The emotion and the fear were painted across her face. Mary and I know that fear all too well. I tried to be encouraging, I could only tell her she was in my prayers. I hope that somehow, my words comforted her. Once again....it's not about me. Damn this cancer!

So, as she continues her battle, I include and recite this prayer for her:

Prayer to Saint Michael:
Saint Michael the Archangel,
defend us in battle.
Be our defense against the wickedness and snares of the devil. May God rebuke him,
we humbly pray.
And you,
Prince of the heavenly host,
by the power of God,
thrust into Hell Satan
and the other evil spirits
who prowl the world for the ruin of souls.
Amen.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Historical Numbers
Date - PSA
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 1.4
51/27/06 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 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 0.35
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 test:
2/?/05 219
12/?/04 189 (Original test)

A Cold December morning

We are off to see the doctor in a few minutes.

I am slightly apprehensive after last month's slight bump in my PSA.

It's the holiday season, I want and pray for a good number. I'm not being greedy here, not expecting or asking for my number to drop by 50%, just would like it to come in a little lower than last month. Something to indicate that the cancer has not started down the path that will lead us to our next treatment regime....likely chemo.

Also, just to add a little fuel to the fire and give some of you insight into what those of us with Advanced Prostate Cancer deal with, yet another clinical trial to treat Advanced PCa has been pulled. This one just happened to be the trial we were most interested in, both because it was available here in Kansas City and because of the nature of the trial. It turns out the incident of heart attack for trial patients was higher than anticipated. We are a little disappointed, but then again, we aren't there yet anyway. It's a bit disheartening as there are such limited treatment options for this stage of the disease.

Mary and I did spend the weekend decorating the house. I do love Christmas. The outside lights, trees and many many other decorations are scattered throughout the house. It kind of makes it easy to forget about cancer. At lease for a few minutes here and there.

Don't give up, don't ever give up!

My next doctor appointment is on Monday, the month flew by fast!!!

Combined with the onset of the holiday season, this video has my emotions running

high. I wrote about the same subject last year.

The video is Jim Valvano at the 1993 ESPY Awards. If you haven't watched it,

even if you have and it's been awhile, take the ten minutes and watched it again. Listen to his words and imagine for a minute......

What Cancer Cannot Do

Author Unknown
Winter 1999

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.

Sounds of the Season

We spent the weekend helping the economy by taking our annual trip to the lake with my brother and sister in law and children, viewed the Christmas light displays and started Christmas shopping at the lake in Osage Beach.

It was a great time - anytime spent around family usually is! Mary would add that anytime spent shopping is also a great time!

Between Thanksgiving and last night I ate way too much!

Solacing to my gastrointestinal pain were the Missouri Tigers winning on Saturday night! My apologies to all you Kansas fans!

A few items I mentally noted, mostly while standing in the cold as the dog did his business at 7:00am:

> I love the sound of rain on the steel roof of a boat dock.

> If you haven't, you must experience the sound of rain as it lands on the branches and freezes to trees. You will need to find a real quiet place, one with no highway or traffic noises.

> Travel can be fun, but coming home can be so appeasing.

> I really enjoy Mary's pumpkin pancakes.

My Thanksgiving - 2007

As I create this post, I sort of feel like an award winner giving an acceptance speech, I have a long list of people and things to be thankful for, I'm bound to forget a few individuals or groups, I'm sorry if I do.

Mary - I have mentioned her support here from time to time, definitely not enough! I am usually at a loss for words while trying to describe what it is she does for me and how much she means to me. I can only begin to guess what this is doing to her? She is everything to me, my Gibraltar, she means the world to me.

Family - son, brothers, sisters, father, in-laws. They are always close, always ready to help. Needed more than I can fathom, appreciated more than I let them know.

Friends - this list could go on, and on and on. It would however be unfair to mention anyone specifically. There are active supporters and distant supporters, both needed in their own way. All are appreciated more than a few words in this blog can express.

Health - you may be asking, how could he put this in his list of things to be thankful for? Well, my health could be so much worse. While there are a number of obstacles (options) ahead of me, I try not to look too far ahead. Obsessing over the 'what if's' and options and side effects of each potential next treatment could drive one crazy. So with this in mind, I live in the right now. I eat like an athlete, work out like a twenty something and if it weren't for a couple of glasses of wine each weekend, I'd be squeaky clean. It's hard. I can't explain how hard it is. Yes on me, but also on Mary. She's the one that makes sure I have fresh fruit every day and that dinners are planned and the appropriate food is purchased. I just help cook occasionally and clean up from time to time.

Spiritual - I am far from a saint, nor am I the ideal Catholic, but I try. I pray so much more than before I was diagnosed, and many, many times the prayers are directed elsewhere. Remember, as I have written here before, it's not about me. I still struggle from time to time (briefly) with Why me? Why now? What does this mean? Why does God test me?

Maybe I'll figure it all out one day. Today I am just thankful for all of these things and the fact that God gave me the wisdom to understand just well enough to fight on. He gave me the faith, love and hope required to battle on, so I do.

Peace be with you all and have a safe and happy Thanksgiving.

My other brothers

I don't think I've gone into much detail regarding this subject, but I know I have referenced it on a number of occasions.

I have two brothers, I love them both dearly. My brother in law Rich is also like a brother to me. However, there is another group of brothers that are becoming more and more important in my life. They are my Prostate Cancer 'brothers'. They live in New York, Texas, New Zealand, Australia, England and more. There is one gentleman who lives in Colorado, he is a firefighter. I don't know him real well, we are just getting acquainted. We spoke briefly at the conference in Los Angeles back in September.

After the golf tournament I sent him one of our caps. Below is the response I received:

Thanks again for the cap, Dave. I wore it the other day in the rain as my crew walk/ran for our PT. I like the kinship that my cancer has allowed me with the variety of other men/women facing these health challenges. You and many of our Brothers are very inspiring as they address their lives as dads, husbands, and vocationalists—all while under the load of a cancer diagnosis and/or management.

I hope you agree, enough said.

One

I had a lot of time over the weekend to think. To think about nothing, to think about life, family, prostate cancer, the usual. I spent the weekend away from Mary and Brad with my brother Doug, brother-in-law Rich, and a few other friends, as they deer hunted.

I don’t hunt, so I just hung out around the cabin, finished a book, chopped wood, watched a few movies and listened to them discuss “would of, could of, should of”. As I write this, it’s Sunday morning. No one has gotten the big buck yet.

I look out the windows across the back of the cabin, I view the beauty of north central Missouri and I wonder what is next for me? When will it come? How will I react? After a few minutes the thought passes.

Next Sunday will mark thirty-three months. So much has changed, one thing remains constant; I have a terminal disease that may one day take my life. Even after this long, as I write these words, I am still stopped in my tracks. Again, the pause is brief, I go on, I must go on.

Today is one-one, one-one; November 11^th. My grandmother would have been 102 today.

However, today my thoughts wander to one person in a big world, making a difference? I am just one person, in a big world, trying in little ways to make a difference. I suppose I am, I wish I could do more, that is not to say I am not proud of what has been accomplished to date.

That is it, not one thought, just one man in one big world.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Foods I love;

- Salmon, grilled on a cedar plank with a glaze made from olive oil, brown sugar, thyme and cayenne pepper.

- White chili - prefer chicken to turkey. The more spice, the better. Served with Mary’s corn bread.

- My smoothie – even after 500 of these, every Monday thru Friday for 33 months.

- Mary’s red sauce with roasted tomatoes and garlic on any pasta noodle.

- A crisp, fresh pear

A new favorite song........

I’m just sittin’ out here,

Watchin’ airplanes,

Wonderin’ which one,

You might be on?

This just in from the newsroom....

PSA = 23.3

Another small, rather insignificant change, but overall not the direction we had hoped we were headed. We are not going to make any other modifications right now, "just keep on riding the train"!

I find the result somewhat strange in that just minutes ago I was exchanging emails with someone, they asked how I was doing, and I told them I was waiting on my PSA, but overall I felt better than I had in months. I put faith in the Lord as he helps me manage through this and hope that my intuition continues to guide us in the right direction.

IIWII (it is what it is), now more than ever....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Historical Numbers

Date - PSA

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 1.4
51/27/06 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 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 0.35
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 test:
2/?/05 219
12/?/04 189 (Original test)

With apologies to Fall

So as you know, I'm not a big fan of the Fall season.

While I do like a few things about this time of year, the fact that nature is preparing for the on set of Winter does not do too much to brighten my spirits.

However, the other morning I found two reasons to issue an apology to Fall. The pictures are not high quality, as I took them with my cell phone camera.

The first are the last three roses of the season. Mary and I grow a pretty mean rose. Several of the plants have reached heights of eight feet, and these are not climbers. Three roses, each from a different plant, each a different color. There's that number three again.....hmmm?



The second is a picture of our Indian Summer Maple tree. I missed it's peak by a day or two but I hope you see the source of it's name. It truly is at it's best during Indian Summer.


Tick, tick, tick.....what's that? The sound of my heart racing as I wait for my monthly test results!

After the letters, we moved on to the numbers

Finishing up on my adventure through my iPod. If you don't remember, or are new around here, back in September I started listening to my iPod in alphabetical order by song title. It's been amazing and a fantastic way to shuffle through the entire 6 meg stuffed into my iPod Mini.

With 14 songs to go (of 1307 in total) I got through the letters and switched to songs that being with numbers. First up was:

100 Years by Five for Fighting - a song that hits too close to home, my eyes well up almost every time I listen to it. "there's never a wish better than this, when you only got a hundred years to live"

15 Beers Ago by the Deaf Pedestrians - I think I got this as a free iTunes song. A head banger, I think they are a Dallas based band?

Well I might've gone too far
'Cuz now I'm sitting at the bar
Without a beer and 13 rednecks
At the bar.

And they're talking about their trucks
And if the Stars will beat the Ducks
And the band onstage that sucks
At the bar.
And this is how I'm gonna end it...

1979 by Smashing Pumpkins - my favorite Pumpkins song by far.

19th Nervous Breakdown by the Rolling Stones. A classic, listed without comment.

29 by the Gin Blossoms. It didn't garner much (any?) airplay but one of my favorites

Only time will tell if wishing wells
Can bring us anything
Or fade like scenes from childhood dreams
Forgotten memories

3 AM by Matchbox 20. The chorus reminds me of 3 A.M. conversations with Mary.

and she says baby
it's 3am I must be lonely
when she says baby
well I can't help but be scared of it all sometimes
the rain's gonna wash away I believe it

40 by Section 5. This a cover of the U2 of the same title. However, Section 5 is a string quartet and the song is from the album titled "Strung Out on U2" [thanks Gary], the album is a must for any avid U2 fan, very cool.

Finally, what was last? What song was #1307? Was there more irony, as noted in earlier posts? Not really.

The final song happened to be 8th of of November by Big and Rich. Put any disdain you may have for country music and listen to this wonderful tribute to the 173rd Airborne during what some say was one of the deadliest battles in Vietnam.

On the 8th of November,
The angels were crying
As they carried his brothers away.
With the fire raining down
And the Hell all around
There were few men left standing that day.
Saw the eagle fly,
Through a clear, blue sky
1965, the 8th of November.

It's wonderful.....isn't it?

Just feeling a bit perky today, not sure why.

A few songs that reflect my current mood:

James Morrison - Wonderful World
O.A.R. - Wonderful Day
Sam Cooke - What A Wonderful World This Would Be
and of course the granddaddy of them all......

Louis Armstrong - Wonderful World

We have a busy weekend ahead of us before Monday's monthly doctor appointment.....A chilly round of disc golf tomorrow morning, a trip to the vet, yard work, dinner with friends, the Chiefs vs. the Packers (Favre's last trip to Arrowhead!).....

I've been ever reluctant to predict test results, but I'm feeling good things for next week!!!

This is such a great song, the words to the chorus, though WAY off base are beautiful, as is the rest of the song.
From the chorus of James Morrison's Wonderful World:

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

I love a parade.....

I started this entry (from Boston) thinking it would be real easy to find the Broadway show or movie that this song came from....well I couldn't!

What I did find out was more than I ever wanted to know about Harold Arlen. Not only did he write "I Love a Parade", but also "Stormy Weather", "Over the Rainbow" and many, many more. My suspicion was that it came from "Music Man" but I could find no evidence to support this idea.

Anyway, I'm in Boston for a conference and while I had hoped to spend the evening in some local restaurant or pub watching the Red Sox win the World Series, the Rockies did as well as my Cardinals did against the Sox in 2004. So now I might have an opportunity to witness the 2007 World Series Parade in downtown Boston.... depends on the start time and my schedule at the conference tomorrow.....

My next monthly doctor appointment is a week from today. I find myself very indifferent about next week. Perhaps because, once again, there is no change in how I feel. This is a good thing - certainly no complaints! So, I'll have some 'chowdah' with an old friend tomorrow night and some local seafood and travel home on Wednesday night. Happy Halloween and a Blessed All Saints day as well!

The Death of the Moonflower

It's Fall, with it's commencement, we enter my least favorite season.

With Fall comes death all around us, natural death but death none the less. Followed by Winter, which has it's moments but I digress. Fall; leaves fall, the grass goes dormant, the gardens dwindle and least pleasing of all, the moonflowers depart for another year.

Our Moonflower patch is approximately three years old. This photo was taken approximately six months after we established the area. We got started after Pete provided just three small starter plants. If you're not familiar with moonflowers they get their name because the large, white, fragrant blooms open at night. There are times when the scent of the blooms fill our entire backyard.

And so I until next year, no more cool evenings with the window agape and the scent of the moonflower filling our home.

Sunday and Sundown....

Eventually two things will come to an end; first I will get through my complete iPod play list and second, we will finish painting my brother in law's house! I would put money on the latter, I have just reached song 995 of 1,246. Yesterday morning yet another bout of irony, songs that began with "Sunday" in the title (think U2 etc.). But my favorite song of the day had to be "Sundown" by Gordon Lightfoot.

Sometimes I think it's a shame
When I get feelin' better when I'm feelin' no pain
Sometimes I think it's a shame
When I get feelin' better when I'm feelin' no pain

It was quite a beautiful weekend in Kansas City, 82 and sunny on Saturday, windy and 65 yesterday. It was nice enough that we played disc golf both days. Saturday we had a big crowd and played a two man scramble, yesterday there was just four of us and we played down in the woods to avoid the 30+ mph wind gusts. I held my own and squeaked by with a one shot victory over Rich, Pete and Jud.

We spent seven hours Saturday and five more yesterday painting. The house looks great we are both aiming to finish next Saturday! I'm strange, yes for a lot of reasons, but I like painting, I always have. In some way I find it therapeutic or relaxing. I'm not sure what Ralph Macchio's problem was?

Two, niner, zero, zilch, nill

Confused? Let me explain.....

Our 3rd Annual Golf Tournament was a tremendous success and I am proud to announce today that we raised over $26,000, exceeding our $25,000 goal. In addition, by adding the donations we received throughout the year, via United Way and a few other events, our total donation to the Prostate Cancer Foundation will be $29,000!

I am so very proud of the effort by the FLHW Board, friends, family and many, many others. Jim P., Rich and especially Pete, what you did this year is very moving. I'm struggling for words (hard to believe, I know!!) ...in less than three years, actually about 30 months, we have donated almost $68,000 to the Prostate Cancer Foundation. Each year the donation was matched bringing the total to nearly $136,000.

Here is one of the thoughts I shared before we began the tournament.....
"A thought to ponder. In its advanced form, prostate cancer is lethal, currently there is no ‘CURE”. As I mentioned, every 19 minutes an American man will die from the disease. To put this in perspective, one man will die for each hole we play today."

So maybe we just did a little bit to change this to twenty minutes, or twenty one, or more!

Thanks everyone - I love you and couldn't do any of this without you.

Rainmaker

Last Saturday morning started with rain, much needed rain.

This put a damper on disc golf but gave Mary and I a chance to catch up on a number of chores around the house. As we worked, I fired up the iPod. After a few songs the list switched to songs that begin with the letter 'R'. So on a rainy Saturday, it was only appropriate that songs that started with the word 'Rain...' were playing. Very appropriate!

Sunday morning was spent playing disc golf, of course. It was just Rich, Pete and myself at Kansas City's "Swope Park". A great disc golf course, near the Zoo, so you can hear the occasional wild animal sounds. I played better than I have in months, winning by four shots. I don't beat these two very often and rarely do I get the best of both of them at the same time! Sorry gents, I had to brag this time.

Fall has arrived in KC, cool mornings, and afternoons that peak in the seventies. I love this time of year for disc golf. I guess you know what we'll be doing next Saturday morning.......

The Sound of Silence

19.30 was my number. This is down slightly from last month [21.80]. Good news!

Not much else to say at this point, hence, the silence.

I had read that the Avodart can take six to eight weeks to begin working. I wasn't expecting much at this point (after three and a half weeks), the chances of Avodart having an impact on my number is somewhat of a long shot anyway. However, you never know......
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Historic numbers:
Date: PSA:
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day does 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 1.4
51/27/06 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 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 0.35
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 test:
2/?/05 219
12/?/04 189 (Original test)

Pins and Pins

It's been five weeks since I added Avodart to my daily pill regime. Yesterday I had my first blood test since the change in treatment, to measure my PSA, testosterone, DHT, cholesterol etc. and so now we wait for the phone call - on pins and pins, and perhaps a few needles.


Here's a picture of the infamous John W. and myself after having lunch on the River Walk last week. It was a short visit but it was a pleasure to finally meet him in person (and Cheryl)!!!


The golf tournament results are getting close. I hope to post the final number next week. I will only divulge this, it looks better than we planned, but the Board must review everything before it is official!!

Not much else for now, Fall has arrived, the trees are changing....time for a Saturday walk in the woods perhaps?

No regrets....

I have spent the past three days in San Antonio at a conference for work. While it was very educational, I also had the opportunity to spend time with a few people that have become important to me since I began my battle with prostate cancer.

On Tuesday, I had lunch with John W. John's blog is linked on the left. He lives in Austin and has CLL. Over the past few years we have become good friends and for him to drive down from Austin just to have lunch was an incredible act of kindness. I'll post the picture here after he sends it over.

Tuesday night, I had dinner with Mark H. Mark and I met at the conference I attended in Los Angeles last month. We had some really great sushi and exchanged a number of stories, thoughts and perspectives on prostate cancer. Like John W he traveled about 70 miles to join me, I really appreciate it Mark!!!

~~~~~~~~~~~~~~~~~~
For the golf tournament I had created a CD based of the music that I have mentioned within this blog - but I forgot to play it.

In case you are interested, here's the song list:

I'll be- Edwin McCain

Amarillo Sky - Jason Aldean

Broadway - Goo Goo Dolls

Beautiful Day - U2

Santa Monica - 3 Doors Down

Life Ain't Always Beautiful - Gary Allan

One Thing - FINGER ELEVEN
Songs We Sing - Matt Costa

Can't Get There From Here - REM

Photograph - Nickelback
Boston and Island Boy - Kenny Chesney

Kind of Blue - Miles Davis

Blue Rondo à la Turk - Dave Brubeck

Back on Top - Van Morrison

The Calling - Wherever you will go

'ACE' Squared

In the end, Friday turned out to be a day truly sent from above. The weather was picture perfect, not a cloud in the sky and a high around 83.

144 players, 36 teams, many, many friends and family in attendance made it even better.

I have to start by once again thanking the members of the FLHW Board, the many volunteers and the sponsors. With out their support, time, effort and guidance we would have never made it. Mary in particular was on her 'A' game.

There were a number of sponsors whom I will recognize in the future on a page at flhw.org. However, three in particular need to be recognized; Jim Prange at BP Direct, Rich Lodes with Coca-Cola and my dear friend Pete.

Jim assisted with hats, t-shirts and many other items the day of the event. Jim - we are eternally grateful for your kindness and generosity. Rich really came through with beverages and numerous raffle items. As for Pete, I can't say enough. Words are just a feeble attempt to thank him and express my sincere appreciation for what he did to recruit sponsors.

Additionally, a number of people traveled from California, Pennsylvania, Chicago, St. Louis, Maryland and several other places in order to play. They left friends and family at home in order to support our cause. A sacrifice that needs to be recognized.

On the day - we had two ace's or holes-in-one. One of these was for a brand new Ford Mustang! Congratulation's Mark and Troy!!

The winners are available here.


Thank you all once again, we might just make that $25,000 donation to the Prostate Cancer Foundation, stay tuned!

Blessed once more.....

Tomorrow is the 3rd Annual FLHW Charity Golf Tournament and it strikes me once again how blessed I am in the midst of the medical crisis within my body.

 

The forecast is calling for clear skies and a high of 81 degrees, absolutely perfect weather for golf!  The tournament has been full for about six weeks and we have sponsors and donors galore. Again, the kindness of strangers is staggering.

 

As I write this I am listening to an absolutely wonderful song, a few years old but a real keeper:

    I'm Feeling You - Santana w/The Wreckers (Michelle Branch)

 

Here's to God blessing us with: golf, friends, family, strangers, compassion, kindness, faith, love and hope.  I will try to express this to the many, many people I see tomorrow but with the hustle and bustle of getting everything coordinated, it sometimes can be hard to get this point across appropriately. 

 

Though I will be glad to see everyone and am appreciative of their efforts, I wish none of us had to be there in the first place.  They would not be there if it weren't for me and Prostate Cancer but the day would not be such a success if it were for their willingness to put their work, their families and their lives on hold for one day.

 

So I think back to a prayer I posted on March 6, 2006

 

Thoughts in Solitude
by Thomas Merton

My Lord god, I have no idea where I am going.

I do not see the road ahead of me. I cannot know for certain where it will end.

Nor do I really know myself, and the fact that I think that I am following your will does not mean that I am actually doing so.

But I believe that the desire to please you does in fact please you.

And I hope I have that desire in all that I am doing.

I hope that I will never do anything apart from that desire.

And I know that if I do this you ,will lead me by the right road, though I may know nothing about it.

Therefore, I will trust you always, though I may seem to be lost and in the shadow of death.

I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

Amen

Today's show is brought to you by the letter G

I started listening to my iPod by song title, in alphabetical order. This is awesome, I can't believe I've not done this before. It's a true shuffle.

Yesterday, having worked my way up to songs starting with 'G', I reached songs titles starting with 'Good....', it was a 'Good' day.

Miss Me?

I knew it had been a while, but I had no idea it had been two weeks!

We, Mary and I, are heads down preparing for this year's golf tournament this Friday.
The tournament has been sold out (144 players) since the third week of August. The weather forecast is calling for an absolutely perfect day; a low of 57 and high of 78. We are truly blessed!

On the health scene, no changes. I added Avodart to my daily regimen a few weeks back and started taking ketokonazole three times a day instead of twice in order to achieve a more consistent dosage. My next Oncologist appointment is the 8th of October.

I've played disc golf the past few weekends, but not particularly well. However, it was enjoyable, which is the point after all.

I heard back from the couple in Austin but need to get back to them, as I mentioned I've been far to busy.

That's it for now, stay tuned.

INAM - part?

The prostate cancer conference in LA is over and I'm back to work.

I left with a few new ideas, one that I have already called my doctor about.

 

This would include adding Avodart to my daily prescription intake.

In simple terms (sometimes the only way I understand some of this stuff) Avodart suppresses DHT (DHT is thought to be approximately 30 times more potent than testosterone because of increased affinity for the androgen receptor.)

Avodart is commonly given to men with BPH, when combined with Lupron and Ketoconazole is has been shown to have excellent results. It's FDA approved and has virtually no side effects. We had already talked to Dr. H about adding this at some point, several doctors at the conference recommended now.  

 

The second thought involves the use of chemo. My team (Mary, Dr H, the team at KU Medical Center and I) need to discuss this further at some point, however I left the conference with the idea that "some point" might be sooner than later.  The short story is this, we add Avodart, watch the results for a few months. Hopefully I'll react very well and my PSA number and DHT level could drop to trace levels (a big maybe). If they do, fine, we stay the course.  Even if I react temporarily or short term, we start chemo when PSA begins to rise (doubles three consecutive months).  Why? I left the conference with a clearer understanding that Taxotere (chemo) is; well tolerated,  can be repeated several times and the clinical trial we are interested in is highly recommended for a case like mine (with bone metastasis).  Additionally, I am young, healthy and motivated. The last three are much more powerful than I imagined, LA made this point even more clear.

 

More on this as it evolves, I just thought I'd give you some insight into an area I don't talk about much here......

~~~~~~~~~~~~~~~~~

INAM - anyone figure it out yet?  It's not about me. Go back to early posts, you'll see it referenced there a number of times.

 

Aside from the above medical information, I left the conference with several new friends. Eric from Colorado, Richard from Seattle and Mark and Nancy from Utopia, TX. That's right, there is a Utopia, TX! 

 

There was one couple from Austin, TX I wish I had spent more time with, my fault for being introverted in this instance!  I saw them in several sessions and should have gone out of my way to introduce myself. As I walked out of the very last session there they were walking in front of me. The thoughts above crossed my mind just as the wife turned and asked "I hope I'm not being to forward but....." she didn't have to say much else. We found a place to huddle and as we began to exchange "stories", (her husband is three months out from diagnosis, he's 46, advanced diagnosis etc.) I could sense how frightened she was. I could not imagine having attended this conference three months after I was diagnosed? Talk about information overload! In the end, I gave them my email but forgot to get their contact information! I hope they read this and reach out, I think Mary and I could provide them a lot of information and support.  I had to catch a flight but we were able to spend about 5 minutes together, 5 pretty emotional minutes. Have you ever reached out and hugged a stranger trying to comfort them? A stranger in that you have never met them, but someone you have so many things in common, so many things to share? Regardless of whether we ever connect, it was an experience I will never, ever forget. Peace be with you both, please reach out if you need to, you are not alone.

 

No Santa Monica

I'm not sure what I'm looking for, hoping for, expecting?

If nothing more I hope to return home with a few more options for future treatments, notice the word I used....treatments.

I write this from 33,000 feet as I am on my way to Los Angeles for the NPRI Conference
I left my family behind. I am missing Brad's birthday. I don't think he minds that I'm missing the actual day, as it's turned in to a two week celebration.

Once more I pause and reflect on the music being dispersed from my iPod. I look at the man in the window seat.I would guess that he's about my age. He appears to be healthy. I bet he's not dealing with prostate cancer. With this thoguht, in my mind I sing along with 3 Doors Down:

If I could be like that,
I would give anything,
just to live one day in those shoes.

If I could be like that,
what would I do,
what would I do?
_______________________
My world is upside down. I'm forty-four years old - why an I having to deal with this dreaded disease? The thought quickly passes, like it always does.

In LA I will spend two and a half days in a conference room. There I will listen to some of the world's most renowned experts speak on prostate cancer, diagnosis, treatments and more. The unfortunate part of the trip is I chose to forgo a car, so getting to the beach will not happen. Those of you that have been with me for awhile know of my attraction to the ocean. No Santa Monica this time.....

What a difference a year makes....

On September 11, 2006 my PSA reached an all time, post-treatment high of 83.97. This year so much is different. Tuesday's test results are in and the number is: 20.8. This is up a little from the last number I posted but not much of an increase since my last test.

Let me explain. The last number I posted was the 16.96, taken on August 2nd. However, four days later I had another test, due to a mis-communication with the lab. The result of that test was 19.25. This just goes to show you how much PSA can vary in a short period of time.

So, back to Tuesday's number...I guess my last post reflects my response; whatever.
Not that I am not concerned - I am, but my number had pretty much not changed since January 2007. Great news if I do say so myself!

Historic numbers:
Date: PSA:
9/4/07 20.80
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 1.4
51/27/06 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 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 0.35
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 test:
2/?/05 219
Original test:
12/?/04 189

For the most part....whatever.....

An update on the 3rd annual FLHW Golf Tournament, we are sold out! Although we continue to accept donations from Sponsors, we do have a full field of golfers! Next year we are planning to expand the event to morning and afternoon tee times to accomodate the number of participants. What a wonderful thing! Our goal for this year's event of $25,000 was lofty, I think we might just make it!

Results of yesterday's monthly visit to the Oncologist; "whatever". That's just the way I feel this month. Though I don't have my PSA number, yet, the discussion with Dr. H resulted in the same conclusion.....keep on keeping on. I think he has done some research recently. He mentioned a few future options that we had not discussed before but were notated on a document Mary and I left with him last month. One being DES or estrogen patches. This was the standard treatment before androgen deprivation therapy (my current regimen). It's not ideal but what part of this is? It's another step to avoid chemo, however, there are issues; before beginning DES, I would have to have radiation to my breast to avoid growing "man-boobs"! Yes, you read that correctly. There have also been incidents of heart congestion, but apparently aspirin or Coumadin can address this concern. The heart side effect is not so concerning to me as it more than likely relates to the average age of men typically taking this path.

Needless to say, these are all future options. Mary and I agree with the doc that though my PSA is high, relatively speaking, it has hovered between 16 and 20 for months now. Also, I am experiencing no pain or adverse side effects. He convinced us that barring a month over month doubling, we would still need to see three or four months of substantial PSA increases in order to take the next step.

Again, my mood is.....whatever. Should I be so blasé?

What a Beautiful Ride

Sometimes I run across music that captures my mood, my mood in another time.
Right now, I'm feeling great; no back tinges, my hips are allowing me to ride the exercise bike 2-3 times a week for 15 minutes and playing disc golf is as good as it's been in a long time!

So today, I was at work reviewing technical documents, listening to my iPod when I ran across the song below. It's by country western artist Gary Allan. I was given a copy from my brother during a visit to St. Louis in July. I've listened to it a number of times, but today it meant a little more.

I'm at one of those 'top of the roller coaster' ride moments, things are going well, even with a Dr. appointment next Tuesday.....

~~~~~~~~~~~~~~~~~~~~~~~~~~
Life Ain't Always Beautiful - Gary Allan

Life ain't always beautiful
Sometimes it's just plain hard
Life can knock you down, it can break your heart

Life ain't always beautiful
You think you're on your way
And it's just a dead end road at the end of the day

But the struggles make you stronger
And the changes make you wise
And happiness has its own way of takin it's sweet time

CHOURS
No, life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride

Life ain't always beautiful
Some days I miss your smile
I get tired of walkin all these lonely miles

And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don’t work that way

But the struggles make me stronger
And the changes make me wise
And happiness has its own way of takin it's sweet time

No, life ain't always beautiful
But I know I'll be fine
Hey, life ain't always beautiful
But it's a beautiful ride
What a beautiful ride

The laughter of a child

Yesterday at Mass I was emotionally stopped in my tracks. There is a three year old little boy, who has cancer. I believe radiation and chemotherapy.

Yesterday was the first day I had seen him since I learned of his diagnosis. He had "the look"; no hair, scars from apparent surgeries, etc. These medical procedures however had no apparent impact on him yesterday. Here was this child, playing kissy face with his mother, happy, content and smiling. He was oblivious, at least at that point in time, of the disease that afflicts him. In fact, there was an essence of joy and contentment about it. I cried for him then, I cry now.

In my silent prayers at Mass I told God I'd trade places with him. Forty-four years may not be a long enough time to live, but three certainly is not.

And so, as I look ahead, I have to remember that moment and use it for strength during the tough times.

---

Below is a message posted on one of the message boards I monitor. It is from the daughter of a terminally ill man in April 1996. His comments are in quotes. Pay attention to the first sentence of his quote. This is what I have been trying to say for a long time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I want to follow the thread on the endgame a little. My dad, age 76, is at the endgame after first diagnosis with Pca in 1988. The disease is hormone refractory and he has suffered a pathological break of the pelvis from the cancer. He is currently on no medication and actually says he is not in as much pain since the break as before. His PSA when last reported several months ago was greater than 900.

His response to the broken hip was to get out the walker we had earlier for my grandmother and rig it up with a bicycle basket. Initially this allowed him to help my mother around the house by setting the table, etc. When I've spoken to him by telephone the past few weeks, he tells me of how he has been out with his walker, a bucket of grass seed balanced in the basket and that he has been sowing the lawn. Last week, with his walker, he was out fertilizing azaleas that he will probably not see bloom again. His spirit amazes and comforts me. He wrote the following recently--and perhaps he can go more gently into that good night than one who is younger and who has young children of his own:

"Sudden, unexpected death simply terminates one's life, but death on the horizon takes on meaning; it forces one to try to wrap up one's life and bring it to a fuller and richer completion. My pending death, although frightening, especially when first confronted, has become an important part of my life. It keeps my life in clearer focus. Every day becomes more precious and I hope more fully lived.

My consciousness has been raised and my love deepened; the world has taken on a new splendor. While all of this makes life more attractive and whets my appetite for more time, it makes death a source of meaning that redeems it somewhat."

Of course the devil is in the dying and the wrenching and tearing of the lives closely woven with one's own. It is my hope that all the suffering involved in and occasioned by my death will be turned to some good -- that, for all of us involved, our sense of values will be clarified and our humanity will be purified and shine more brightly as we embrace and strengthen each other... There are blessings to be found even in dying and the loss of a loved one, if we are open to them..."

The dance of the dragonflies

We spent last weekend at my brother's property in central Missouri. It's 150 acres of paradise.

I mowed grass again like last summer. I find it very therapeutic. We rode four wheelers/ATV's and ate real well. We enjoyed each other's company and simply 'getting away'.

Brad got to drive the four wheeler. At first he rode with me on the back, then a few trips around the house on his own. He absolutely loves it up there. In fact, I think he would go every weekend if we could.

Doug has a wildlife camera setup on one of the trails. It uses infra-red to track a heat source and then captures two pictures at a time. It had been in place for a few weeks so he was anxious to see what might have been captured. As we reviewed these on my laptop he was a little disappointed. Then, as we had almost finished looking at them, this appeared on the screen! Bambi's Papa is right!!!

Saturday evening we sat out back after dinner and talked. At one point there were eight to ten dragonflies dancing around our heads. Not bothering us, just staying close, dancing in the light of the dusk. It was very inspiring, something I will remember for a long, long time.

Sometimes, it really is the simple things.......

Sycamore Summer

Sycamore Summer
8-13-07
(On plane on way to Philly)

A summer breeze,
traverses the sycamore leaves,
they strike up their song,
on a harsh, dry day.

The mid-summer sun,
burns with intensity,
the ground below,
vast, dry, thirsting.

Through a parallel path,
we wait for reprieve,
theirs comes in rain and cloud,
mine through blood and vein.

We both live in cycles,
theirs measured in annum's,
mine being shorter,
just four treacherous weeks.

A soft summer wind,
kisses the sycamore leaves,
a song strikes my ear,
hope touches my heart.

Mirror, mirror....

I've been exchanging emails with a man in a town about 80 miles east of here. He's young (mid-40's), advanced stage, young kids, etc. , a VERY similar prognosis - I just have a two year jump start on him.

Today he sent a few photos of himself and his daughter. She races sprint cars at tracks in mid-Missouri. That is pretty cool. However, I looked at the photos and thought about what he might be going through. It made me cry. Welcome back to the office, welcome back to reality!

On one hand, the pride he must feel in watching her perform is apparent. However, the fear that grips him about PCa, and the future is equally apparent, at this time, perhaps more prevalent?!

I sense he and I will converse more.......

A glimpse in the rear view

I'm writing this at 33,000 feet on my mobile phone, returning to Kansas City from a business trip to Philadelphia.

This Saturday is a big day, it marks two and a half years or thirty months post diagnosis! As my friend David likes to say 'that's a big damn deal!!'

Being on a plane and without internet access I am not sure where this places me in relation to the 'average' man diagnosed with metastatic or advanced PCa? Frankley, we never really cared.

From that dreaded day in 2005 in Dr. D's office we have never approached this like my case was average.

Sometimes, like when Lupron/Casodex only worked for less than a year, we were on the wrong side of average. However with my current regemine, we're still seeing results three times longer than average. How does the saying go? 'There are lies, damn lies and then there are statistics? Or something like that......

Each month, each step of this journey has been a learning experience. I have met some absolutely wonderful people. I have grown closer to those around me (both family and friends), closer to God and I have changed, wow have I changed!

Just go re-read entry #1 (February 2, 2005). Not only is my tone different, my attitude, my outlook and more have changed as well. Yes it's true I know so much more about PCa now than I did back then, but I have to honestly admit that I am more positive tonight than I have been
in months.

Cure? I said I was feeling positive not that I was feeling crazy! That being said, at 30 months I'm feeling like 60 months may just be a start......you never know?