'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?