January 31, 2008

up, up and away....

Last night, after a VERY long day at work and after attending our home owner's association meeting, I sat down and wrote a blog entry. It was verbose and eloquent and right to the heart of the matter. It got lost in cyber space.....

My PSA: now 36.2

Another rise. Although not drastic, certainly headed in the wrong direction.

Tomorrow we are meeting with an oncologist at the University of Kansas Medical Center to discuss some options and clinical trials involving chemotherapy. As far as Advanced Prostate Cancer goes, there are not many options and none of them offer the potential for a cure. What they do offer is hope, and time.

I also have an appointment for new CT and bone scans next Tuesday. Additionally, we are attempting to get an appointment with a doctor in Virginia. He is one of the national experts on Prostate Cancer, however, he is in such demand that it may be late March before we can get in to see him.

I find myself remarkably calm about what is happening at this point in time.

Historical Numbers
Date - PSA
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)

January 28, 2008

Pain in the neck

Again, multiple meanings to the title.

First, I have been having pain in my neck, shoulders and back for the last few weeks.
The strange part is it moves around. What is most concerning to us is the fact that it is consistent.

Perhaps we'll get some insight from today's doctor appointment?

Meaning number #2: Me...being a pain in Mary's neck! She put together a nice family evening Saturday night in celebration of her sister's and my birthday's. I don't express my appreciation for her enough in this blog (or in person for that matter!). She does so much for me! She is the best. I am so thankful, so blessed to have her as mine!

Back to the pain; just to be clear on a scale of 1-10, we are talking 2.5, maybe 3. It is somewhat strange that after spending a weekend playing disc golf, I would have thought it would be worse this morning? Actually, it is better than it has been in weeks! Virtually gone.

Saturday it warmed up to the low 50's so a few of us played disc golf in the afternoon. Nothing eventful, except I lost one of my favorite discs. This disc was given to me by Pete on my 40th birthday. This is the same disc I threw a hole-in-one with three years ago. I am really bummed out! Even with my name, phone number and "Happy 40th Dave" written on the bottom, no one has called!

Yesterday we played in the 21st annual Ice Bowl. The event raises money for local charities. This year FLHW was selected to be one of the beneficiaries. The weather was absolutely stellar, reaching into the high 50's. Almost 300 players showed up, shattering last year's record. I played well, but not sure were I placed yet. I was one of four players to make the shot (into the basket) on the 'closest to the pin' competition. I won a gift certificate to the Disc Golf shop, which I certainly appreciate. It was a great day, official scores and totals to follow soon.


In ten minutes I leave for the doctor. The appointment itself does not have me worried, the phone call with the results of my blood test is what does. The PSA results will not be available for 24-48 hours!!

January 21, 2008

28 Days

Over the next four weeks, a lot of things in my life are set to transpire. There will be a number of milestones, appointments and decisions that will be strategically important in our battle against advanced prostate cancer.

- This weekend I will turn 45. Some say when you get older birthdays don't seem to matter that much anymore. For me, they have taken on a whole new meaning, each one more and more important.

- Monday the 28th I have an appointment with my Oncologist. The results of that PSA test will tell us a lot about what's going on now and what direction we take going forward.

- On Friday the 1st we are meeting with a doctor at the University of Kansas Cancer Center. Depending on the available clinical trials, this might be one option. Regardless of my PSA number we have reached a point were we almost have to make changes. A nerve racking, highly stressful decision, but one that we will make with a lot of medical and spiritual guidance.

- On February 3rd, this blog will be three years old. Over three hundred entries posted, many new friendships created, the documentation of my PC journey, as well as personal journeys shared from all over the United States and the world. The other day I received a personal note regarding the impact of this blog that touched me deeply. It affirmed for me that the original purpose for this blog is sending the message that I had hoped.

- On February 5th the FLHW Foundation is hosting the next Texas Hold 'em Poker Tournament. Details are available at the website (www.flhw.org)

- At some point early in the month I will have another bone and CT scan. There is nothing more pleasurable than having radioactive fluids injected into your veins. I guess chemo might be better but I'll report my experience when that day arrives! The results of these tests, along with my PSA and Testosterone levels will help guide us in the next step.

- February 18th
is the third anniversary of my "official" diagnosis. I typed "Yee Haaa - a day to celebrate!!!", deleted it, then wondered, "is it really a yee haa moment"?

- There is another appointment we may try to setup with a Prostate Cancer specialist. He is hard to get in to see, and would require a few days away from work, plane rides, rental car and hotel stay. He has a fantastic track record, but we are just considering this as an option at this point, no decisions have been made.

So, that is a peak into the next four weeks. In between all of this is family life, work and of course, just a few rounds of disc golf.....that is, if it ever warms up around here!

January 16, 2008

One for the money.....

The local news station was interviewing an 80-year-old lady because she had just gotten married -- for the fourth time.

The interviewer asked her questions about her life, about what it felt like to be marrying again at 80, and then about her new husband's occupation. 'He's a funeral director,' she answered.

'Interesting,' the newsman thought. He then asked her if she wouldn't mind telling him a little about her first three husbands and what they did for a living.

She paused for a few moments, needing time to reflect on all those years. After a short time, a smile came to her face and she answered proudly, explaining that she'd first married a banker when she was in her early 20's, then a circus ringmaster when in her 40's, later on a preacher when in her 60's, and now in her 80's, a funeral director.

The interviewer looked at her, quite astonished, and asked why she had married four men with such diverse careers.

She smiled and explained, 'I married one for the money, two for the show, three to get ready, and four to go.'
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Some days you cry and some days you laugh...... thanks Dan, the timing of this was ideal.

January 14, 2008

Two Big Thumbs

I wrote back in December about a "good" cry we had watching a movie [here], well it happened again this weekend. Brad suggested we watch "Bridge to Terabithia" Friday night. Thinking it similar to a Lord of the Rings, sci-fi, fantasy movie I agreed, Mary did so reluctantly.

I am here to report, it is anything but that! It's a great movie, I would highly recommend it, two thumbs up and all that! I'm not going to give away the movie, but let's just say once again I was weeping like I'd been cutting onions!

Due to the medications I take, and their side effects (hot flashes) I can't sleep passed about six thirty in the morning. So on the weekends, if we don't have a ball game, or disc golf, I usually get up and watch movies. This weekend it was 'The DaVinci Code' [big thumbs down] and 'We Are Marshall' [two thumbs up!]. I'm not sure how far they blurred the lines between fiction and fantasy with this one, but it didn't matter, I thoroughly enjoyed it!

I also finished reading a book that was written by a friend from business school. "One Young Soldier" was written by Gary DeRigne about his experience in Viet Nam. It was a good read and opened my eyes to someone's experience with war. Certainly a lot different than getting insight via "Platoon", "Born on the Forth of July", etc. [Mr Trueman, if you are still reading my blog, please send me your email, I lost it and I have a signed copy of the book for you].

Nothing further, two weeks until the next PSA test, time is dragging..........

January 11, 2008

....because I must

I'm tired, side effects of this cold I have been fighting for a week or more.
I am also tired because of 'this'.

Something that is rarely discussed by me, here, or on the prostate cancer message boards is
the mental and emotional strain of dealing with PCa. It's constant. I can't express the word CONSTANT enough.

I, we, have done a good job of living our lives in spite of the anvil that constantly hangs above our world. Now however, with a large decision looming, the anvil, and the strain of keeping it levitated increase at exponential rates.

I always have to add this so my words are not misinterpreted, I am not depressed. What I am pointing out here is simply this, you and I are different. You who live 'normal' lives, lives without cancer, get through your day differently than I do. Your conscious thoughts, those things that you think about in between the important aspects of your life, those thoughts are far different for me, than you. In those down moments you are like I was when I led a normal life. You think and wonder about what to do tonight or this weekend? Maybe you spend time thinking about simple things, regardless my thoughts at these times are ALWAYS about PCa. What does the rise in my PSA mean? What will it be on the 28th? Then what? And after deciding 'then what', will it work? etc. and so on.....it's really a #*^@ed-up way to get through the day.

But I go on, because I must.....for her, for him.....and sometimes....for me.

January 06, 2008

The simple things

In the the midst of a mildly chaotic life, there a few, simple things that bring me pleasure.

Of course there is disc golf. Who would have thought the first weekend in January would bring ideal weather for my second love.

Saturday morning it was 47 degrees at tee off, today it was 55. Yes, with weather like this, we played both days! Today we ventured to a park just north of downtown Kansas City. Water Works park is arguably the hilliest and one of the toughest courses in town. In addition, it has a number of fantastic views of the downtown skyline. We should play it more often, it's quite challenging. I shot +7 which is respectable considering we've been playing a much shorter course in the woods all winter.

I'll miss two out of the next three Saturdays due to early morning basketball games, but that's fine with me. It goes without saying, a little more time with Brad is certainly more important.

This brings me to that which brings me the most pleasure, being with Mary and Brad. This weekend allowed a lot of time together. We put away all the Christmas decorations, cleaned up the yard and watched a little football. Nothing real exciting, but sometimes just being together can bring one the most pleasure.

As the cold weather is certain to settle in for the next two months, I'm really looking forward to more weekends and days like the last two.

I wrote what follows last month, as I flew back from Atlanta. It seems like the right time to include it here.

What He Became
12/7/07
It's many years later,
he's no longer a boy,
well on his way,
to becoming a man.

He's solid and honest,
and his life is lived,
at a pace that allows
him to understand
and comprehend
the beauty that surrounds his world.

He tasted love,
but not yet settled,
his life,
or found her, his one.

What brings me the most joy,
is his confidence and peace,
and knowing that,
his longing for me,
has passed years ago.

And I smile.

January 04, 2008

...and now, back to the music

Mary and I shared a ride to work today. This is something we should do more often. It saves gas, gives us a few minutes together, alone.  I'll try to make it more of a priority.
 
Before departing I'm searching my iPod for something different. I find CCR (Creedence Clearwater Revival). I never realized I had 22 of their songs? After a stop for gas and Starbucks, I drop her and the song changes to "Have You Ever Seen the Rain?". As I always do, I take to words, and apply them to me, to the here and now.
 
(John Fogerty)
Someone told me long ago There's a calm before the storm,
I know; It's been comin' for some time.
When it's over, so they say, It'll rain a sunny day,
I know; Shinin' down like water.
CHORUS:
I want to know, Have you ever seen the rain?
I want to know, Have you ever seen the rain
Comin' down on a sunny day?

Yesterday, and days before, Sun is cold and rain is hard,
I know; Been that way for all my time.
'Til forever, on it goes Through the circle, fast and slow,
I know; It can't stop, I wonder.

CHORUS
Yeah!
CHORUS

January 02, 2008

Jumping the Gun

My Oncologist called this morning with my PSA number. When it was him on the phone, I knew right away that I was not going to like what followed.

12-31-07 PSA number: 30.9

And so we wait through the month of January. Perhaps the last few weeks have had an impact? My diet didn't change but I was certainly less active and much more lethargic than usual.

No sweat..... it is what it is!

Historical Numbers
Date - PSA
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
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)

January 01, 2008

Mirrors and Crystal Balls

Obviously, I'm reflecting while looking ahead at the same time.

2007 - was an incredible year. You may not realize this, but it was the first year since 2004 where we weren't subjected to the "chemo decision".
In 2004, we were still researching, still waiting for diagnosis, testing etc.,  but we had already began to research and knew chemo was possible.
In 2005, I actually came within about 72 hours of starting a chemotherapy regimen, but thankfully, my PSA dropped after stopping Casodex.
In 2006, we were preparing for chemo once again, but switched Oncologists and added Ketoconazole to my treatment regimen.
In 2007, my PSA stabilized to a level that we decided collectively with the doctor that we were managing the cancer and month over month did not have to consider chemo.  After my appointment yesterday, I am hopeful that we will be well into 2008 before we may have to consider it once again!

So now, a look into the future...

On January 27th our local disc golf club will be holding the annual Ice Bowl. There are two rules for this event, No Whimps, No Whiners.
We play regardless what the weather conditions may be.  Refer to last year's blog on the event for insight.  I was pleasantly surprised to receive a phone call a few days before Christmas, when the coordinator called to tell me FLHW was going to be one of this year's beneficiaries! On a personal note, what makes this year a little more special to me is that the event will take place on my birthday!!! If you would like to participate, here is the registration/donation form.

A week later, on Fat Tuesday, my Knights of Columbus Council, in conjunction with FLHW will hold another Texas Hold 'em event. The date will be February 5th and the location is likely to be Johnny's in Overland Park, I'll post full details once the arrangements are  confirmed.

Spring Break will find us enjoying the sun and beaches of Anna Maria Island once again.  We still have several months before we go, but I'm already day dreaming about the beach, the sun and of course, the seafood!

Another potential event in 2008 may be a disc golf tournament which would also be a fund raiser, as well as an opportunity to promote an awareness of prostate cancer in our community. It is likely to be in the April or early May time frame.

The summer will bring another vacation and I am hoping we can make it to the rocky mountains and Colorado. This sounds quite relaxing and plans will begin soon....

This Fall we will have the fourth annual FLHW golf tournament. We are hoping that the proceeds from the 2008 golf tournament, along with the funds raised from the additional events, will bring our cumulative donation to over $100,000 in three years.

We are are looking forward to working with the FLHW Board and family and friends throughout the coming year.  Do you find it strange that as 2008 begins, I am actually peeking ahead? Just a little?