David’s Blog

Memento homo, quia pulvis es, et in pulverem reverteris

Advanced Prostate Cancer, Ash Wednesday, Father Bob -

I was going to write today about last night’s poker fundraiser, but I’ll save that for another day.

I attended Ash Wednesday Mass this morning, it moved me, on a number of fronts.

The translation of the title is: “Remember, O man, that you are dust, and unto dust you shall return.”


First, the service was conducted by our former associate-retired priest Fr. Bob. What a gentle, remarkable presence. I could feel the smile consume my face when he first appeared. His homilies are always heartfelt and meaningful. Today he appropriately spoke about Lent.

As he read the gospel, and I’ll paraphrase here, it was basically this; don’t brag or be boisterous, don’t parade around in public showing all the righteous things you may have done, God knows. Matthew 6-1: “take care not to perform righteous deeds in order that people may see them; otherwise, you will have no recompense from your heavenly Father.”

It made me think this; while I appreciate the comments I receive here, I hope it is clear that the point is not the comments I do receive, it’s what this might do to those that read my blog, find it beneficial, and do NOT comment. As I have said ad nausea, it’s not about me.

Prostate cancer aside, here’s a little unsolicited advice that I feel compelled to dispense during Lent; go do something nice for someone. It could be a friend or stranger or family member. Do it because it’s the right thing to do. Don’t do it for the accolades, don’t do it because it might make you feel better, do it because it might make them fell better.

I now step down from my pulpit, Peace be with you.

….reaching back into the bag of tricks!

Advanced Prostate Cancer, Casodex, disc golf, HDK, Ketokonizol, Lupron, Nilandron, PCa, thunder snow -

Happy Anniversary, my blog was three years old yesterday!!!

Friday we met with the oncologist at KU Cancer Center. For those of you in Kansas City that have been in the former Sprint headquarters building on Shawnee Mission Parkway, you would never recognize it, the place is beautiful. They did a wonderful job of renovating the building. As for the service, the disposition of the support staff was consistently warm and friendly. It was quite a refreshing experience, given the situation. The icing on the cake, while sitting in the waiting room, a volunteer pushing a serving cart approached each person and offered refreshments water, soda or juice. Additionally, she offered light conversation and a smile. They get an “A” for service!

Our appointment with Dr. V lasted well over an hour. He was again very patient and sincere. We reviewed my statistics, medications, etc., as well as the health charts Mary and I maintain. We also reviewed a matrix that Mary created that lists potential treatments, based on the research that we have done. Dr. V told us that we captured the current options and took the time to discuss the plus and delta for each option. Before I discuss what’s next, I probably need to provide some history. I’ll leave out some of the details in order to keep this slightly shorter than War and Peace!

Feb 2005: I started Lupron and Casodex. Lupron is a shot, it shuts down the production of testosterone by the testicles. Casodex is an antiantrogen and shuts down the testosterone produced by the adrenal glands. This is the “standard” treatment for advanced prostate cancer, to which I had immediate, although short lived results.

November 2005: I stopped Casodex. In some cases this can lower PSA. In mine, it lasted a few months.

September 2006: With my PSA rising into the 80’s, I started High Dose Ketoconizal with Hydrocortizone (another antiandrogen). Though I reacted well, my PSA never fell below 16. Also, because I was not in pain, we stayed on this regimen through December 2007, when my PSA rose to 30.

Now: my PSA is at 36. There is no standard ‘next step’, there is a lot of grey. Below are the primary options that make up the grey:
– DES: this was the standard treatment years ago. It is still used in cases like mine. DES comes in a pill form that is taken once a day. The issue is it is Estrogen. With that comes breast enlargement. In order to compact the breast issue, patients are given a single round of radiation across the breast bone. [please keep your comments about the ‘man-zere’ and ‘bro’ to yourselves] It also caused some cardiovascular concerns, so it is typically taken with a blood thinner.

– Chemo: the FDA approved chemo treatment for Prostate Cancer is Taxotere with Prednisone. The drug is administered interveneously once every three weeks for 8-10 treatments (depending on tolerance and reactions).

– Then there are a number of alternative treatments. I hesitate to use the word ‘alternative’. This is not witch doctors using ‘goat horn and frog tongue’. This is expert medical doctors specializing in Prostate Cancer that primarily use approved drugs in an ‘off label’ manner.

> Where we ended up. Being that I am not on an antiandrogen at this time, Dr. V recommended I try one more variation of antiandrogen. Starting today I will begin taking Nilandron. Nilandron is similar to Casodex. The anticipated side effects are minimal. We’ll give this 4 weeks +/- to see if I respond. If not, then we will search once again through the grey and decide what the next course of treatment will be.
~~~~~~~~~~~~~~~~~~~

On an unrelated topic; have you ever experienced ‘thunder snow’? Yesterday morning we were playing disc golf. Around 9:00 AM we started hearing thunder. Next thing we know the sky is filled with lightening and it begins to produce freezing rain. As we hurriedly made our way back to our cars, the precipitation changed to the consistency of Styrofoam. It was crazy, I guess you had to be there…….

up, up and away….

Advanced Prostate Cancer, chemotherapy, PCa, PSA, University of Kansas Medical Center -

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)

Pain in the neck

Advanced Prostate Cancer, APX, disc golf, hole-in-one, Ice Bowl -
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!!

28 Days

Advanced Prostate Cancer, chemotherapy, disc golf, texas Hold 'em, University of Kansas Medical Center -

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!

One for the money…..

blog -

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.

Two Big Thumbs

blog -
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……….

….because I must

Advanced Prostate Cancer, emotional strain, prostate cancer -

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.

The simple things

Advanced Prostate Cancer, disc golf -

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.

…and now, back to the music

blog -
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

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