December 29, 2009

2009 Winds Down

One would think that as the years go by I'd have more to say. I was just looking over my blog stats and 2009 may be the year with the fewest posts.

Interesting... I would guess that I'm either more complacent, becoming more comfortable with my situation, or that there just haven't been a lot of changes, and subsequently, less news to share. The reason doesn't matter, I'm going to enter 2010 with the goal of posting more frequently.

I'm in the midst of two weeks off and it sure is flying by! A week from today I have my monthly appointment with Dr. V. I'm still feeling the same with little to no pain for the past several weeks which leaves me in my usual predicament of not knowing what the heck to expect.
At some point in 2010 I'm going to have to move on to another treatment regime. It could be another round of chemo. Perhaps we'll find a clinical trial we are comfortable with. Maybe we'll take the conservative path, again, and move on to DES/Estrogen.

At this point in time, I do not have a preference and am not leaning one way or the other. Mary will elect or prefer to take the path that is most conservative and has the least impact on my, our, overall quality of life. She is a saint. I can't say and don't mean to imply that her choices are
wrong, it's just at times I'd like to be a little more aggressive. However, had we taken a more aggressive path over the years it doesn't mean my current condition would be any different. Once again, perhaps she's right.

Peace be with you all, have a Happy New Year and may 2010 bring you good health, joy and happiness!

December 18, 2009

Joe had to go!

In just over an hour I'm going to have lunch with a really, really good friend.

Our friend Joe is off to Tucson next week. It's a great career opportunity and what is sure to be a life changing event.

I'm not sure what I'll miss about him most? Here's a sample of some of my blog posts that mention Joe. Disc golf on Saturday mornings will never be the same without Joe, Sadie and Pete (his dogs). My mind goes back to road trips and overseas trips with Joe.

Sweden the summer of 2006, my how three years has just flown by! Followed up by the British Open. A trip to Des Monies and Omaha in April of 2007 for back to back tournaments. Perhaps the most fun was the day Joe, Rich and I went to Marshall and Columbia Missouri and played 72 holes!

A picture from this years FLHW Golf Tournament captures his personality perfectly!



So long my friend! Be safe, stay in touch and come back often!

December 15, 2009

There is an app for that!

It took some time to develop, but the final version of the FLHW iPhone App is complete and ready to download. If you are using an iPhone or iTouch, click the image below to download. You can also go to the iTunes store and search for 'FLHW'. It's free, please go download today and let me know what you think. There is a lot of information on FLHW as well as on Prostate Cancer in general. You can also share with friends, etc. via Facebook and Twitter.

I owe all of this to a company here in Kansas City, MTB Mobile. Jeff and Andy put a lot into this little app, and they did all of it out of the goodness of their hearts. Thanks to both of you for all your hard work and persistence through the Apple approval process.








December 11, 2009

2009, you were good to us!

2009, where have you gone?

It seems like just a few weeks ago we were wrapping up 2008.

Today we closed the year for the Faith, Love, Hope, Win Foundation by making our annual donation to the Prostate Cancer Foundation. I am proud to announce that for 2009 our donation is the same as 2008, $32,000!

To raise that much money, in the midst of this economy makes me so proud of all that have helped throughout the year. Two poker events, a disc golf tournament, the greenhouse event and of course the golf tournament.

I'm a little speechless right now. In just four and a half years FLHW has raised over $132,000!!

We couldn't have done any of it without the help of all the players, sponsors, friends and family.

God bless you all.

December 09, 2009

Lucky Sevens


Monday the 7th we held our 7th FLHW Texas Hold 'em Poker Tournament. We started these in 2006 as another way to spread the word about Prostate Cancer screening as well as to allow people that may not play golf to come out for a good time and to help support FLHW.

Over the past three years the poker tournaments have raised approximately $10,000 of the overall $132,000 we have raised for the Prostate Cancer Foundation. I was rather proud when I added this up on Monday before the tournament.

At this week's event we had 42 players and raised slightly more than $1,500! It was really great to see a number of first timers. I hope they enjoyed themselves and will come back for future events! The room and tables were packed! In the end Brad took first and Tim second.



I really enjoyed the evening and am looking forward to our next poker event in February!

Also on Monday I had my monthly doctor visit, Lupron shot, PSA test and quarterly Zometa infusion. The meeting with Dr. V was rather quick. My PSA rose to 108.8. We decided to maintain the current regimen through the holidays. I am feeling great and the other tests were in the normal range. When I return next month, on January 4th, as long as I remain pain free and my PSA remains somewhat stable, we will just continue on. (All of the pictures are here).

December 06, 2009

Hold 'em or Fold 'em?

Mary, Brad and I saw the movie "The Blind Side" last night. What a fantastic movie. I sure wish Hollywood would produce more movies like this instead of some of the junk they churn out. I highly recommend this movie. It is based on a true story. Sandra Bullock turns in a very good performance and Tim McGraw is quite surprising as well.

Even with the cold weather we are experiencing, I played disc golf both yesterday and today. Yes, it was about 28 degrees yesterday and 33 today when we started, but with very little wind it was beautiful, perfect weather for a round. More importantly, I played pain free and remain that way 10 hours later. Next weekend will be my last opportunity to play with one of the regulars before he moves to Tuscon. I'm a little sad to see him go. He will be missed a lot.

Tomorrow is day 28 which means it's time to go see Doc V. I've been feeling really good since a week after my last visit, however we just never know what's going to happen.

Finally, tomorrow night is another event for the FLHW Foundation. We will be playing a Texas Hold 'em poker tourney at Johnny's Tavern in Overland Park. Click here for details, for those of you in town I hope you can make it!

December 02, 2009

Shooting Blanks

I'm suffering from writers block lately. Nothing seems interesting enough to write about.
So what do I share? I have my monthly doctor appointment on Monday. As usual, I have no idea what to expect. I have been feeling great the last few weeks so one would think a lower number is in store, but as I have come to realize, there are few times when how I feel dictates the result of my PSA test.
Yesterday I had to see my General Practitioner. It's probably been at least a year since I saw him. The visit was not related to PCa, just a minor foot issue. So as I'm sitting there waiting for him, it occurred to me that the five year anniversary of my first PSA test was coming up on December 10th. As I mentioned to Dr. S, it seems like yesterday while it also seems like a lifetime ago. I wasn't 'officially' diagnosed until early February, but this marked the beginning of what has become my crazy life. Five years have passed, so much has happened to me, to us.
My dad had a birthday last week and turned 78. It seems strange, there is no way he's almost 80 years old, is he? Sorry Pops, don’t mean to call you out here, but I did.
Christmas is only three weeks away and I have no idea what to get Mary. Wow, I'm up the proverbial creek this year!
Wish me luck, I'm going to need it!
Finally, Monday we (www.flhw.org) are having another Texas Hold 'em Poker Tournament. All the details are at the website, just click on 'Events'. I hope to see some of you there!!

November 28, 2009

Plus Two

It's two days after Thanksgiving and what a great holiday it has been this year.

We spent Turkey Day with all of our family here in Kansas City, yesterday I returned to the disc golf course and today I am off to the Missouri-Kansas football game.

I ate way too much on Thursday, but it felt good and was as expected, quite delicious.

Though I didn't play particularly well on the disc golf course, it was great to get back out on the disc course yesterday. I played pain free! It was also one of my last few rounds with Joe before he moves away. The sadness will grow as we get closer to his departure date.

The weather was spring like, high in the mid 60's. Mary, Brad and I put up the Christmas tree and I got the outdoor decorations up as well.

Last night Mary and I had a great dinner at Bristol and then saw a comedy show. It was quite funny but the sex jokes got a little tiring after two hours.

Now I am off to the MU- KU football game! Once again, the weather is ideal and I predict a Tiger victory!

November 23, 2009

Alphabet soup

I think I have mentioned here before that I like to read. My primary authors these days are James Patterson and Sue Grafton. I like the murder mystery writings of both.

I am just getting into the Alex Cross series from Patterson and only have one of his 'Women's Murder Club' series to finish.

As for Sue Grafton, for those of you not familiar, she has written 20 books in the Kinsey Millhone 'alphabet series', "A is for Alibi....M is for Malice", etc. I have read all but "I is for Innocent". I can't seem to find it at any of the used book stores and may have to resort to the library.

I stumbled upon Grafton on Spring Break 2008. We were in Anna Maria Island and after day five or so I had already finished "The Kite Runner" and another book I had brought along. I remember standing in Walgreen's trying to find something, anything to read. It was there I found "J is for Judgment" and was immediately smitten with Kinsey Millhone.

The books all take place in the mid to late 1980's and without going into detail, Kinsey is some kind of character, pun intended. She likes peanut butter and pickle sandwiches, drives a beat up 1947 Volkswagon Beetle. She is pretty much a loner. I could go on, but as I finished the book tonight, this sentence had deep meaning,
I hadn't known him long, but some people simply effect us that way. Their sojourn is brief, but their influence is profound.

I add this as a footnote to the many, many men and women I have come to know over the past 4+ years. So much has changed, so much remains the same, and so much is still a mystery.

In case I don't post before Thursday, may all of you have a wonderful and blessed Thanksgiving wherever and whomever you spend it with this year!

November 19, 2009

Sometimes....

There are times when I sit here and I wonder to myself.... "I have cancer...really?"

I don't want you to think I'm depressed, it's really the opposite. My leg/hip pain is all but gone and I'm feeling really good physically.

Maybe that's why at this particular time I'm questioning the reality of my condition.

I spent last weekend at my brother's property. He deer hunts with a few guys from St. Louis and I sit in the house and read books, watch college football and cook and overall just relax. This is the same place I wrote about in 2006 and in September of 2008. I would like to find more time to get up there. It's incredibly beautiful.

I'm really looking forward to Thanksgiving. I'm even trying to lose a few pounds as we approach the date. Looking forward to wonderful food and spending time with family. Again, more time to relax, and spend time with those I love.

November 13, 2009

What is it with bonfires?

There's just something mesmerizing...I can't find words to explain it. Even as I sit here enjoying this massive blaze here in north central Missouri.

It's maybe 50 degrees, but with little wind and a big blaze, it feels like a little slice of heaven.

The weekend ahead calls for nothing but relaxation, books, movies and quiet.

I'm writing this from my phone, more later.

November 09, 2009

Did you feel that? I did!!!

I had my monthly doctor appointment today and it well on all accounts.

First, I'm not sure what they changed with the process but it was more efficient than ever!
Way to go KU Cancer Center!

My PSA currently stands at 93.08, that is down from 101.46 last month!
It seems that the current regime of medications continue to keep things stable.

On another note, it seems I may have re-aggravated my right leg, again. The weather in KC this
past weekend was unseasonably warm, well into the 70's. Given that, I couldn't pass up the opportunity to play disc golf both Saturday and Sunday morning. Can you blame me? Sunday morning I had a really bad up hill shot through some trees and I twisted rather strangely on my follow through. I felt a sharp pain in my right hip and thigh for a few seconds, but as I walked off to the next shot it dissipated immediately.

It didn't really bother me the rest of the round as witnessed by my beating the other two players. (I won't name them to save them from the public embarrassment.) The pain didn’t surface again until trying to sleep last night and again today. Walking is fine but sitting and turning on the hip is tender.

We discussed this in detail with Dr. V and decided we will just be patient and see if it goes away like it had previously. Aside from Advil the only other option would be stronger pain killers and then radiation if it becomes persistent. I'm no where near that condition. It's good to know what the options are should the pain increase.

With the drop in my PSA we have another 28 day reprieve. This time there is likely to be much less disc golf in between visits!

November 04, 2009

A Mental Countdown

Four weeks went real fast.

Monday is my next appointment with Dr. V.

Where does the time go?

I approach this meeting with absolutely no expectation or preconceived idea about what the results
will show. I have been through the little dance too many times over the past 57 months to worry or even attempt to guess where this is going.


My leg is returning to normal, though there is still occasional, very mild pain. Usually if I sit too long. We will discuss with Dr. V for sure.

In the past week there have been three pieces of news related to prostate cancer that are of interest.

First, Dendreon Pharmaceuticals announced that they have submitted their application to the FDA for the drug Provenge. This has been a six year journey for them and somewhat good news for the group I fall into; late stage, hormone refractory. Provenge has been shown to add an average of four months of life. While this doesn't sound like much, it is rather significant.

A new drug from Epeius Biotechnologies called REXIN-G made quite a splash this week. In early stage trials it is showing very promising results. I am not one to get too excited, it's early, and the trials are limited, but it adds a little much needed HOPE.

Finally, the American Urological Association came out with a position that clarifies the need for continued early screening. I hope this goes a long way to help counteract statements made last month by the head of the American Cancer Society. As a PCa friend said via Twitter yesterday; screening should not be the controversy, the controversy lies in the decisions made around treatments. Particularly for men with early stage and low grade PCa.

And so I close with this, Hope lives on in me, always. This disease may take my life, but it will not kill me. What I mean by that, and pardon me for being repetitive, is that in the face of this adversity I push on full speed. With the strength provided by my wife, my son, my family, my friends and complete strangers, I march on into this daily battle with my head held high!

October 30, 2009

Pints for Prostate

I think I found a source for a new event!!

October 28, 2009

The Windy City













Being that Brad had a 5 day weekend last week, we decided in early September to make the most of it and head for Chicago.


I wish the weather would have cooperated but it wasn't so bad. The rain was light and only bothersome as we waited outside the Shedd Aquarium. Brad had never been on the eL, in a public bus or a cab, we did all three! We visited ESPN Zone, the Hancock building, Michigan Avenue stores and enjoyed a dinner at Giordano's. It was a fun three days away and I can’t wait to go back soon.


On a personal note, leading up to the trip I once again had been having hip and leg pain. I had spent a lot time the previous week or ten days sleeping and using a heating pad at night. It was cold and damp out the week that it seemed to be at its worst. Advil helped but the mild pain was rather persistent. When we arrived in Chicago the twenty minute walk to the hotel included a very noticeable limp on my part. Leading up to the trip I had reached the point where Advil was no longer needed but the mild pain was still lingering. The good news is by the time we walked back to the eL on Saturday, it was without a limp. Three days back at work and it's all gone.


Mary thinks the pain may be from arthritis after having chemo, I'm not so sure. She did research on this and found instances where patients have developed arthritis after chemotherapy, specifically Taxotere. We'll have a lengthy discussion with Dr. V on the 9th and go from there.

Fall is here. Although it's not my favorite time of the year, the beauty of the foliage is stunning this year in KC. That is all for now.

October 27, 2009

Something new for FLHW

I am proud to announce the launch of the new and improved www.flhw.org
go check it out when you have a minute!

I owe a tremendous thanks to the site designer, Joyce Hutchings. She's a co-worker from years and years ago at Sprint. Joyce put a lot of time into updating the site and teaching me the basics on updating it as well. I think she did a fantastic job and hope after looking it over, you agree. As I always say, the kindness of friends and strangers never ceases to amaze me, Joyce thank you very, very much!

There are still a few tweaks for me to include but as it stands, it is ready for prime time. Please poke around the site and let me know what you think!

After all this, I'm not done! Up next, it's kind of a secret but I'll just say "Yes, there is an app for that."!

October 21, 2009

It didn't suck....

Pardon the somewhat crass language but in the midst of yesterday's four hour sailing adventure,
Captain Jim responded to a self posed and somewhat rhetoric question "How was your day off?"

We departed Overland Park at 9:30 AM. It was sprinkling with a thick overcast. As we traveled
west and north to Lake Perry, the clouds thinned and the rain stopped. I doubt we have many more
70 degree days in 2009, so when we backed away from the dock at 10:30, we were pleased that the temperature was already a balmy 63!

I'll end the diatribe here by saying four hours later we were beat, but as you can see from the pictures, it was a good beating with strong winds and beautiful blue skies!

Thanks Captain Jim!
Son of a son of a sailor
By: Jimmy Buffett
As the son of a son of a sailor
I went out on the sea for adventure
Expanding the view of the captain and crew
Like a man just released from indenture

As a dreamer of dreams and a travelin man
I have chalked up many a mile
Read dozens of books about heroes and crooks
And I learned much from both of their styles

Chorus:
Son of a son, son of a son
Son of a son of a sailor
Son of a gun, load the last ton
One step ahead of the jailer

Now away in the near future
Southeast of disorder
You can shake the hand of the mango man
As he greats you at the border

And the lady she hails from Trinidad
Island of the spices
Salt for your meat, and cinnamon sweet
And the rum is for all your good vices

Haul the sheet in as we ride on the wind
That our forefathers harnessed before us
Hear the bells ring as the tight rigging sings
Its a son of a gun of a chorus

Where it all ends I cant fathom my friends
If I knew I might toss out my anchor
So I cruise along always searchin for songs
Not a lawyer a thief or a banker

But a son of a son, son of a son
Son of a son of a sailor
Son of a gun, load the last ton
One step ahead of the jailer

I'm just a son of a son, son of a son
Son of a son of a sailor
The seas in my veins, my tradition remains
I'm just glad I don't live in a trailer

October 19, 2009

I'll be brief...

I just ran across this and thought I'd share. It's a quote from Mother Theresa.

The fruit of SILENCE is Prayer
The fruit of PRAYER is Faith
The fruit of FAITH is Love
The fruit of LOVE is Service
The fruit of SERVICE is Peace

October 14, 2009

Photo's from the 2009 FLHW Golf Tournament



We are still waiting on a few payments and bills so I'll post the financial results in an upcoming blog. I will say that even in this economy, I will be once again humbled!!

October 12, 2009

672 hours of indecisiveness

Two good updates from our appointment with Dr. V. this morning....

First, since we didn’t have to go to the lab, we were in and out of the office in under 90 minutes!
Not that I'm looking for drive thru Oncology services, but this was nice! It gave Mary and I time to share a celebratory cup of coffee and then an early lunch at the Blue Koi.

Second, and most importantly were the results of last weeks tests:
Blood:
PSA - 101.46
This is up, but only two points.

CTC - Circulating Tumor Cells: 0
This is the third consecutive time since April that the CTC measure was 0

Alkaline Phosphates: 55
Still well within the normal range of 29-110

Testosterone: 10 <

Cholesterol - 155
This is back down from 210 approximately 90 days ago - not sure why it was so high previously

All other blood markers were normal.

Scans/X-rays
Bone scan was stable with no new areas notated

C/T Scan - The only thing notated was a lymph node in my lower right abdominal area which was slightly larger this month than last. Dr. V was convinced that at this time, it was nothing to worry about.

Once we decided we were relatively comfortable with my current condition and that we would maintain the current treatment, we discussed potential future treatments. Dr. V mentioned an upcoming trial that we may want to consider, SPRYCEL® (dasatinib). We are going to do some research on it to determine if it is a viable option. When the time comes that we are ready to begin a new treatment, we will also confer with Dr. L in Houston regarding other potential clinical trials for us.

Dr. V. also mentioned Provenge as a potential treatment in the future. Of course it is pending approval by the FDA, so it is once again a matter of time. Another example of why we must continue to try to manage the cancer by maximizing the time we can gain from each treatment.

So there you have it, as in the past it's really hard to get excited, although we were relieved that all of the tests, with the exception of the stubborn PSA, were stable. We have a reprieve for another 4 weeks, 28 days or 672 hours!

October 06, 2009

Is it just me?

What the heck is wrong these people?!

I have this long sorted story about the inefficiencies and blundering of medical care.
This has nothing to due with the current 'crisis' as described by our elected officials,
but it does say a lot about health care.

This morning I find myself furious to say the least. I was supposed go in for a CAT scan and bone scan today, along with having numerous vials of blood drawn. Late yesterday afternoon Mary talked with the radiology lab to confirm the appointment for this morning. They needed to review the usual list of preparatory questions; "Is the patient experiencing any medical issues, etc. When they asked about allergies for the first time she had to inform them that I had an allergic reaction to the iodine the last time I had the scans. One would think that since the scans were taken at the same facility just 3 months ago, the reaction would be notated in my file, but apparently not. It was at that point and for the first time that we were told I needed to be on Prednisone the night before and morning of the scans. Yes, we had been told I needed to take Benedryl in preparation, but a prescription for Prednisone was never issued, nor mentioned for that matter.

This led to a flurry of phone calls from Mary to the nurse, the pharmacy, and back to radiology to make sure the prescription was written and issued to the pharmacy and the appointment was maintained. After Mary facilitated the situation, I took the Prednisone at 11:00 last night and we went to sleep believing that the crisis was solved. Oh no...not so fast!

Mary followed up this morning first thing by calling the Radiology department at 7:15 again this morning to confirm that I was still scheduled and on track. She was questioned about what dosage the doctor had prescribed. Apparently, it was half the dose that I ultimately needed. Consequently, I took the medication for nothing as the radiologist will not allow the scan until I have the proper dosage, as my allergic reaction can be dangerous. While I appreciate and respect this, I am infuriated that A. the prescription was not issued to begin with and B. It was the wrong dosage.

I repeat, I am furious but thankful I have this outlet.

I am not in the medical field. However, looking at this situation from a patient's perspective, along with other expereiences I've had in the last few years, I cannot believe the way patients get treated. The blatent disregard for my my time, my schedule and ultimately, my health and my life is totally unacceptable. Is it that far fetched to expect that someone could have either
sat us down when we scheduled these tests and gone over this in detail or issued the prescription when we scheduled the scans so that we would be prepared.

So now we will spend most of the day getting my bone scan and then we have to be back at the cancer center tomorrow morning at 7:00 for the CAT scan.

Maybe I'm over reacting. Perhaps whining, a little and feeling sorry for myself. In the end, the results will be there next week when we meet with Dr. V, but that's not the point, is it?

October 04, 2009

It fell upon us....

After having a fantastically mild summer, Fall fell with immediacy!
The leaves are changing, the morning temperatures are in the low 40's and
thoughts of turning on the heat are dancing in my head. It's too early though!

Saturday was BUSY! A quick round of disc golf and then I attacked the fence replacement
project I had been putting off for weeks. OK, before I bore you to death with my fence project
bringing it up has a purpose.

I have said here on numerous occasions that I am constantly amazed by the kindness of friends and strangers. Yesterday as I began the deconstruction part of the project my neighbor stepped through the newly created opening between our yards and announced "Since we share the fence, what can I do to help!" You'll notice the punctuation, is not a questions mark, he did not pose it as a question. So, six hours later, after removing the old and installing most of the new, I couldn't thank him enough. I once again thank God for the people in my life, whether they be family, close friends, neighbors or strangers.

This week includes a flurry of tests. Tuesday I will spend most of the day at the KU Cancer Center being poked, injected, scanned and x-rayed. I'm not sure what to expect when we review the results on the 12th with Dr. V. Once again, I feel great, after all I was able to spend 6 hours in the yard and the only part of me that hurts is my wrist from the reciprocating saw.
So what will these tests bring? Where will they lead us on this crazy journey? The uncertainty at this point can be a bit distracting. Mary and I are doing our best to not dwell on it at this point in time. No decision will be made on the 12th, since we hope to reach back out to Dr. L in Houston before our next decision. So it will be a few weeks and I'm just not sure what options
we will embrace....Stay tuned.

I promised pictures from the golf tournament and though I am waiting for more to come in I've decided just to post what I have for now.
I'll try to post these tonight.

September 28, 2009

Today's number is the number 5

Friday was the 5th Annual FLHW Golf Tournament. After a complete day of relaxation on Saturday, yesterday it was time to further relax, reflect and enjoy time with Mary and Brad.

Mary and I spent a few hours at the Plaza Art Fair. We walked out a little lighter in the wallet after finding a photographer that had beautiful shots of Anna Maria Island. The Rod & Reel and The City Pier are two of our favorite places to eat when visiting, I can’t wait to return.

Back to Friday. I knew it was going to be a good day when Mary and I woke up well rested after sleeping through the night. As you can imagine, the night before is usually filled with last minute tasks and stress. This year things were different, easier. It's like we had done this before! When I let Buck out at 6:30 the sky was an absolute remarkable shade of blue. The best way to describe it is the shade of the Prostate Cancer ribbon. The temperature was crisp and in the high 50's. I stood on the back porch looking at this:



The day went off without a hitch. We once again had a full field of 144 golfers. I started the round with comments but this year it was a little different, quite a bit more emotional. I got choked up a few times but made it through my little speech without blubbering. Talking about my case in front of crowds has always been hard and the mere mention of Mary's name almost brought me to tears. After that though we had a fantastic time. We had a number of people come up and tell us that this was by far the best golf tournament that they had ever played in! Quite a compliment that touches me deeply.

I'll follow this post tomorrow with a link to all the pictures I have so far, For now, I thank God for the weather and the blessings of our generous and compassionate family, friends and supporters that continue to give us strength and hope. Without them, it would have been just another golf tournament, with them, it was far, far more!

September 24, 2009

What? Me ... Worry?

In just over 24 hours we will kick off the 5th Annual FLHW Charity Golf Tournament.

You'd think after five years I wouldn’t be worried, but I am. It always comes together, but as the big day approaches, there is always that apprehension and concern to make sure everything goes smoothly, no matter how much we plan and organize. We have such a great team, starting with the FLHW Board, and then the wonderful group of volunteers who make it all happen!

Except for a few singles, we one again have a full field of 36 teams.In this economy, I thought we would have a hard time attracting sponsors, but we are in line with last year's sponsorships. We are blessed in so many ways!

The weather, which is always a reason for worry, was looking rather bleak on Tuesday's forecast, however, by yesterday, it all changed. The forecast is now calling for a high of 74 degrees and partly sunny, the rain is supposed to hold off until late Friday night or early Saturday morning. We'll take it!!!!!!

Pictures will follow over the weekend, maybe even a little video.

Thanks to everyone, especially Mary.

September 17, 2009



From my friend Jenny who ran in this 5k race last weekend. Great video with real stories and great facts on PCa!

September 15, 2009

Unwanted, but hardly unexpected

If the past 55 months have been nothing else, they have been tumultuous. Today was just another example of the uncertainty that is my life.

My PSA number was back up, this time to 99.43

I was pretty bummed out, for about an hour. Seriously, by the time Mary and I got home I was pretty much over it. It's a good time, if there ever was one, because I'm busy...between the preparation for the upcoming golf tournament, the reorganization going on in the office, and a few other irons I have in the fire, I have little time to slow down or dwell on my PSA number.

We did leave the doctor with this plan; on October 6th I will have follow up bone and CT scans. Aside from taking up most of a day, these don't bother me too much. I am slightly concerned however about the total number of these I have had over the years. I should probably know this off the top of my head but I would estimate that this makes a dozen. That much radioactive dye can't be that good for me. On the 6th I will also have a PSA, CTC and alkaline phosphate test. The combined results of these tests are what we are hoping will lead us to a new plan.

The choices for my next treatment are limited; DES (estrogen), another round of chemo (3 weeks on, 1 week off versus last time when I did 1 on 3 off) or a yet to be determined clinical trial.

So that's the update, pretty crummy overall but we'll get through this like we have before. Many, many thanks for all the kind thoughts and prayers!

September 13, 2009

For the cause....and another month in the books.


This morning Mary and I walked in the first annual Great Prostate Challenge 5k/fun walk. It's the third year for the event but the first year in Kansas City. According to Skip Lockwood (pictured above), CEO of ZERO, this year there will be seven events throughout the country. Perhaps this year the event may even break the $1 million mark? That would be phenomenal! Next year we hope to get FLHW more involved to help with volunteers, recruit runners and walkers, and provide support any other way we can. While FLHW is focused on research for advanced PCa, this is such a great cause and a great way to increase awareness we really need to help out.

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On another topic, once again, a month has passed by and on Tuesday I have a follow up with Dr. V on Tuesday. Time is flying by lately. I hope and pray that the current regime of pharmaceuticals is working, time will tell.
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Finally, the 5th annual FLHW Golf Tournament is less than two weeks away. We have been sold out for about a week now and that makes four our of five years! We really might have to consider having an option for a morning tee off next year. That will require a lot more coordination and volunteers but I think we can do it. Donations and sponsorships are down a little this year but I am certain the amount we donate to the Prostate Cancer Foundation will once again be significant and certainly appreciated.

September 07, 2009

Laboring Day

If there remains any doubt as to how well I have recovered, I have played disc golf each of the last three mornings. On top of that I just mowed the lawn in addition to a number of things around the house yesterday. I would say things have returned to some sense of normalcy.

The week ahead however is bound to be chaotic, at best. Last October the company I work for announced they were selling out to a much smaller competitor. After all the legal and governmental wrangling, the merger was approved on July 1st. Many of the other departments have announced who was leading, staying and going. Many, many very experienced, professional
and sincerely wonderful people have lost their jobs.

Rumor has it that this week my department is going to finally announce our reorganization. My gut tells me I have about a 50/50 chance of being offered a position. I have been through this before, as I'm sure many of you have. It's a horrible experience and in this economy I am sure it's going to be even more stressful.

Regardless of what happens to me, there are a number of people I work with that are sure to be impacted. What this will do to them mentally and their family financially will in some cases be devastating. For others it will become a breath of fresh air, a new start. For the former, I send a silent prayer your way and hope that God grants you the strength required to get through this ordeal.

September 01, 2009

September is officially Prostate Cancer Awareness Month

In the midst of all the health care reform turmoil the President took time out to continue the tradition of proclaiming September Prostate Cancer Awareness Month!

August 31, 2009

Slap!! That's the sound of reality smacking me in the face!

I'll try not to bore you with too many details, but this requires a little background...

Last Saturday, August 22nd, I played disc golf as usual. No big deal.
Sunday, I went to Emporia, KS to play in a disc golf tournament. On the way to Emporia
my right thigh/hip started to hurt a little bit. The best way to describe this is it that it is reminiscent of the original pain from five years ago.

I brushed it off to the 90 minutes in the car, but knew deep down it must have been more. I popped a couple Advil and really thought nothing more of it. Just as the second round started, I took a few more Advil and that I thought was the end of it.

Monday I got up to catch a plane to Orlando for work. I worked out, maybe too hard, and headed for the airport. Again, three hours of sitting and my leg wasn't feeling real good by the time I arrived in Florida, popped a few more Advil. I was able to catch a decent night sleep but Tuesday was 9 more hours of sitting in a meeting room. Not so good , my leg was reminding me who is in charge, more Advil.

This continued off and on all week, Advil about every 12 hours, but sleeping was not an issue. I took the weekend off from disc golf, which as you regulars know, was possibly the most painful part of my week!

The good news is it has now been over 48 hours since my last dose of Advil. The pain isn't gone 100% but I am feeling way better than I was on Friday night and Saturday afternoon.

I have felt this way at different times over the last four years but it has been a while. I had forgotten the paranoia, the dread, the deep feelings of doubt. You start to question the past decisions, the lack of future choices, the what if's, the what's next, etc.

I'm feeling better, much better now. We had an FLHW Board meeting tonight and just being able to sit with my close friends and sharing in conversation with them always helps.

Just a little speed bump? I guess we'll find out in two weeks when we meet with the doc!

August 23, 2009

What a weekend

Here's what you do when you have cancer - you try to ignore it. Maybe not ignore, perhpas it's better if I say go on without it as best you can.

Friday, I left work a little early and joined a friend on his sailboat at Lake Perry. Lake Perry is about an hour from here, between Lawrence and Topeka, KS. It was a bit windy when we arrived but we were out on the lake by 6:30 PM and were able to sail for two hours.
It was unbelievably relaxing and Jim, I'm ready to go back when you are!!

Yesterday, I played disc golf with a smaller crowd since some of the guys were out playing in a tournament. It was good to see Mark back out with us. He's first and foremost a ball golfer but I think he's slowly but surely getting the bug, plus his back is feeling better. Regarding my game, I just couldn't catch Rich, falling one shot short.

Last night we had family over for dinner on the patio and then enjoyed a fire in the fire pit. We really enjoyed the evening. The weather remains unseasonably cool...it's hard to believe it's August in Kansas City.

Today we drove to Emporia, KS and played in a disc golf tournament. I joined Pete, Steve and Steve. I played better in the morning than the afternoon and finished in a tie with Pete for 6th place. Yet another Steve played lights out this afternoon to move from 6th to 2nd place. Sometimes it's really fun to watch another guy you are playing with tear it up. He's also one of those very quiet, humble guys - great job Steve H.!!

So not real exciting to read, but I hope you found it to be worth sharing. I just wanted to share with you the fact that I'm not slowing down!

August 18, 2009

A ten, not a perfect ten but I'll take it

Just a quick update from Monday

PSA, down 10%
Still 88 but the trend has been broken!

Also, the CTC (Circulating Tumor Cells) test came back at zero and my alkaline phosphates are normal!!

Not much else to report, four weeks from now we re-test for PSA again
and I get my quarterly Zometa infusion.

Now, back to my 'normal' life!

August 17, 2009

How low can you go?

I'll take a few points, just the beginning of a trend!

This morning I'm off to the doctor for my monthly shot and blood tests.
As always, it's a crap shoot but my body is telling me things are going well on this new medication. At times, I find it somewhat amazing how in tune I am with every little tweak, ache, pain, etc. that I experience. It comes from four and a half years of constant worry, constant obsession. Right now I am feeling good vibes!

I spent Saturday and Sunday in St. Louis with my brothers. I introduced my nephews to disc golf and really hope they catch the bug. I watched a little golf with my dad and then took in the Cardinals game with my brothers. It was a great game and what a beautiful stadium! It wouldn't be a trip without providing the family with a little tech support! Two printer, scanner, faxes in and working, one with wireless support! Note to the industry, Plug and Play is a joke!

It's a rainy Monday, is this God's way of telling me he is washing away the PCa cells? Perhaps. One way or another, I'll know in about three hours.

Finally, school starts on Wednesday. Brad will be in seventh grade...I'm in shock! Where is the time going?

August 10, 2009

Prayers

I'm not sure if I have, or even should share the following? I figure, what the heck.

As we sat in Mass on Sunday and prayed, I stopped to think what I really was asking God for when I pray.
I don't ask for a cure to this disease, should I? Would that be selfish?
Mostly, I pray for time. I pray for good test results. I pray for happiness.

Next Monday is huge. Monday we will find out if re-starting Keto has helped. If not, we move on, but the options are not very encouraging.

The good news is that I feel great and would guess it is working, but we've been disappointed before, so I try not to get to excited. As Mary has put it, we are cautiously optimistic.

So I conclude with this:
God, give me strength
Allow me happiness in he midst of turmoil,
Provide me more time,
And the sense to know how to use it properly
In Jesus name,
Amen

August 03, 2009

The wbmw...

I knew, just knew, that when I first saw her that there was something special about her. What I didn’t know was that we would eventually fall in love and spend the rest of our lives together.

While we have known each other for well over twenty years, it was eighteen years ago today that we were married.

As I have said here (not often enough I realize) is what she does for me is beyond special. What she means to me and how different I would be without her cannot be described by a few words on these pages.

She jokingly reminds me from time to time the she is "The wind beneath my wings" and you know what? She's right on the money!

Without you, I'm nothing
With you, anything is possible

August 02, 2009

My mind was elsewhere

Today we played a casual round of disc golf, Pete, Steve, Joe, Steve and myself. We all played rather terribly but the weather was ideal and the camaraderie top notch as we relived this past weeks events.

My thoughts were elsewhere as I could not help let my mind wander to the upcoming week. My friend Dan has his monthly follow up, please send a few prayers his way, Another friend John has a birthday tomorrow, Happy Birthday John!! Melissa turned the big 30 today, congratulations youngster!
Most importantly tomorrow is our 18th wedding anniversary and that weighed heavily on my mind.

I had already acquired a card and gifts for my lovely bride but I could not help wonder 'how many more?" I pray for 20 and I hope for 25. Somewhat sobering to read, my apologies, but that's where I was at and where my mind shifts to from time to time. I don't dwell on it too long either as I continue to try to focus on what's right and what's good with my current condition. I am not sure there are many 46 year old men that could play 153 holes of disc golf in seven days, much less do it with advanced Prostate cancer. Seriously, I even cam home and mowed the grass!

I'm sharing this not in the hope of receiving accolades but because that is what this blog is all about, this is how I'm dealing with it, leading and living a "normal" life to the best of my ability. I hope and pray that there are others who find it and read it and are inspired to fight on!

Dan, my thoughts and prayers are with you tomorrow. John and Melissa, peace be with you both. Mary, well I'll have much more to say about this tomorrow!

July 31, 2009

The final tally

Today I finished this years World Disc Golf Championships, what a week it was.

I won't go on and on with round by round coverage but instead will share the personal goals I had established before play began.

1) Shoot a total score of 360 or better. This was a bit of a stretch and meant that I had to average 60. Turns out I missed by little averaging 62.5 for a total of 375.

2) I wanted to shoot at least one round 'rated' 900 or above. A round rating is determined using your score versus all the other players in you division based on some highly complicated formula even I don't understand fully. I consider this one a success because both yesterday morning and this afternoons rounds were over 900; 911 and 912, respectively.

3) I was trying to shoot par at the woods or 'Down Under' course but shot a 4 over 58. This included some terrible putting on my part. I missed 6 putts between 15 and 25 feet.

4) Finally, and most importantly I wanted to have fun and meet some new people - this was not much of goal to set because if I wasn't having fun, what was the point of playing? Today I played with a most gracious man from Japan and a retired Army veteran from north east Kansas. During the week I played with guys from Tulsa, Austin, west Texas, Seattle, St Joseph Mo and South Dakota. In addition I met many, many other local and visiting players that were just great guys.

Enough for tonight next year the event is somewhere in OH and I have a tee time in the morning!

July 27, 2009

What is this all about?

It's going to be a crazy week of disc golf with very few thoughts, worries and concerns about
Prostate Cancer. I will be wearing blue every opportunity I can get in addition to an FLHW hat
as well.

For those of you not familiar with the sport, here's a little insight into this week:

http://www.pdga.com/videos/kansas-city-worlds-video-coverage-episode-1

Note is the voice over: the largest event in the history of the sport!!

July 24, 2009

Welcome to my World(s)

Quick health update: I can feel the Keto working, seriously. Up until Tuesday I was experiencing pain where my thigh meets my right hip. While playing disc golf this last weekend I experienced mild pain when planting my front foot, a move that is very important to long drives. Anyway I started Keto Monday night I haven't touched the Advil since! I even went out a practiced my drives last night with the bro-in-law. The result was absolutely no pain and some rather encouraging drives!
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I'm starting to get a little excited about the Disc Golf World Championships.
Here's a story from our local Fox affiliate and several links if you want to follow along next week:

July 20, 2009

Up, up and ?

We went to the KU Cancer Center this morning for my monthly visit with Dr. V and to receive my monthly Lupron shot. We left with one of those good news/bad news stories.

Good news is they took all the correct samples etc. and we were in and out in just over two hours! No missing vials, missed tests or long waits for the pharmacy. It was efficiency at it's finest!

On the other hand, my PSA was up, way up. It now stands at 97.04 up from 66.14 last month.
While we did agree to pay less attention to my PSA when we left MD Anderson in April, this climb has me a bit concerned. This is my highest level since September 2006.I did leave with two new prescriptions for Ketoconozale and Hydrocortizone (HDK). This combination is what I took in 2006 when my initial treatment stopped working. It worked for 16 months, then I tried Nilandron, then I did chemo. Going back to Keto + HDK is somewhat of a risk. There is a chance that it might not work at all. We decided to give it one more try before moving on to something more serious and more toxic. We can try DES (very low amounts of estrogen) but want to keep that in reserve and may end up trying that next. Until some of the newer drugs (Provenge and Abiraterone) are either approved or open new trials, my next choice is another round of chemo in combination with some sort of clinical trial.I knew my PSA was going to be higher, I just did not expect it to be such a dramatic increase.


Last month when we met with Dr. V we discussed the option of starting Keto again, as we were aware my PSA level was steadily trending upwards. I'm not sure about all this yet. Mary and I had lunch and I came back to work. My head is swimming right now with many thoughts.

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On another note, the World Disc Golf Championships are being held in Kansas City next week. Nearly 1,000 disc golfers from around the world will be competing in various age groups and divisions. I signed up to play in the 'Advanced Masters" division. This is for non-professional men over the age of 40. We play one round on Tuesday, two on Wednesday and Thursday and one more on Friday (the leaders play again Saturday).

Several of the guys I play with (who are better than me!) are in the same division and over all about seven of use that play on Saturday's have entered in various divisions. Here is the website: http://kcworlds.com/

Starting on Tuesday the 28th you can see how I'm doing here: http://pdga.org/tournament-results?TournID=8105 Scroll down to "Advanced Masters" and look for my name, I signed up late so I'm not showing up as registered yet.

I really have no expectations but have set a few goals for myself; I want to post no score higher than the 60's and finish in the 75th percentile or my division. Us local guys should have a slight advantage playing these courses all the time, but we'll see if that helps at all! Overall, I just want to have fun, meet some new people and play respectable over the four days.

July 15, 2009

"Stable", adjective, from Latin stabilis

Main Entry: stable
Function: adjective
Inflected Form(s): sta·bler \l ""
Etymology: Middle English, from Anglo-French estable, stable, from Latin stabilis, from stare to stand Date: 13th century

1 a: firmly established : fixed, steadfast b: not changing or fluctuating : unvarying c: permanent, enduring 2 a: steady in purpose : firm in resolution b: not subject to insecurity or emotional illness : sane, rational 3 a (1): placed so as to resist forces tending to cause motion or change of motion (2): designed so as to develop forces that restore the original condition when disturbed from a condition of equilibrium or steady motion b (1): not readily altering in chemical makeup or physical state (2): not spontaneously radioactive

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Are you scratching your head yet wondering what the heck I am getting at?

Well I picked up my copy of the scans and the Radiologist’s report and within the seven page report lies the bottom line, the conclusion the good news!

CT Scan: Impression
Abdomen:
1) Stable sclerotic foci within L2 vertebral body consistent with blastic metastatic disease from the patient's known prostate cancer. No new sclerotic metastses are identified.

2) No evidence of hepatic metastatic disease or abdominal lymphadenopathy.

Pelvis:
1) Stable sclerotic lesions within the hips and bones of the pelvis consistent with metastatic disease from the patient's known prostate cancer. No new osseous lesions are indentified.

Full Body Bone Scan
Stable bone scan with uptake in multiple pelvic osseous metastases. There is no scintigraphic evidence of new osseous metastatic disease since February 23, 2009

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All this means is that the overall disease appears to be stable. On Monday we will find out what the blood and other markers (PSA, CTC, BAP etc) are indicating and we'll go from there.

Not sure what the options are, but we’ll be sure to let you know once we discuss with Dr. V, and perhaps Dr. L in Houston

July 14, 2009

How did you react?

In this case I broke out in hives!

Today I had a follow up bone scan and C/T Scan. Like everything else with this disease, it all takes time.

At 1:00pm I was injected with a radioactive isotope in preparation for the 4:00pm bone scan. Not much to the prep other than accessing my port and injecting me with a syringe they take out of a lead container that contains a warning symbol for radioactive material. It's kind of ominous.

Immediately after the injection I spent the next hour drinking a "creamy vanilla" mixture in preparation for the C/T scan. This scan was approximately my 4th or 5th in the last four and a half years. It's a relatively easy process that seems to have gotten easier over the years. My memory isn't the greatest but I do remember that the first few times the liquid was dreadful and it seemed to take a lot longer to consume, or perhaps it's just that the wait used to be longer after consuming the liquid. Anyway, after I finished drinking the required dose I was immediately escorted to the scan room. The C/T device is not like the scanner you see on TV or in the movies. It's like a gigantic donut. I lie on a table that slides me in and out of the donut hole. Before the scan starts however they injected me with some type of iodine that reacts
with the "Creamy vanilla" liquid in order to make 'areas of concern" light up on the scan. I can tell when they begin the injection, as I feel a weird warming sensation in my lower abdomen and bowels...lovely!

Today, shortly after the injection I started feeling a little itchy but thought it was the chigger bites from recent rounds of disc golf. As it turns out, I was was having an allergic reaction to the iodine and started breaking out in hives. I didn't put two and two together until they were done and I was back in the waiting room with Mary. I told her I was itchy, she pulled up my shirt and discovered a few hives on my stomach. I returned back to the procedure area and the doc, the nurses and techs knew right away what it was and 50mg of Bendryl took care of everything. The only problem was the Benadryl wiped me out and I needed a 45 minute nap when I got home. Also, now anytime I need a C/T I'll have to take Prednisone (steroids) the day before. Hopefully, it's low dose and at least my knees will feel good for a day! We were surprised that I had an allergic reaction, as I've had numerous scans previously, and I never had a problem. The doctor explained that one's immune system can be altered after going through chemotherapy, so we will assume that's the case.

Mary and I had 90 minutes to kill before the bone scan so we ran out to one of our favorite places to eat, the Blue Koi. Ever since chemo my favorite dish at the Blue Koi has never tasted quite the same. I am glad to report that today it was great once again! We both enjoyed the meal and our time together mid-afternoon.

The bone scan was routine: lie on the table and 45 minutes later, you're on your way. After receiving the Benadryl, I think I might have dosed off for most of the procedure and my ride home as well!

I'll pick up the CD's tomorrow and we'll review with Dr. V on Monday.
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I'm not sure where this thought came from today, it may have been the murder/mystery I was reading or the article on Elizabeth Edwards from an old dog eared People Magazine, but I was thinking two things; I think Mary and I are doing a pretty good job of living a "normal" life. I'm not sure what normal looks like anymore, but my guess is there is some semblance of it in our day to day lives. That makes we happy.

The other thing I was thinking is I am grateful. Grateful for what you may ask? I am grateful for all the time God has blessed me with since this happened. So many people in this world die quickly, unexpectedly and without any warning. I was just reflecting on how lucky I actually am!

July 08, 2009

Once again....

Once again a week has passed and I have failed to post an update.
I do have a slight excuse, we spent the holiday weekend in Minneapolis with a dear friend.

The weather up there was ideal, low 80's and no humidity and not a hint of rain. We had not been there in years, literally it was before Brad was born, so we're talking 1995? For that I would like to apologize. Good friends are hard to come by and we should have visited long, long ago.

The four days were a whirlwind of activity; Mall of America, a Twins game, Lake Minnetonka, Excelsior, Lord Fletcher's, Wayzata, a visit by Mary's old house, Lake Reilly, an afternoon cruise on the Lake, spending the evening sitting around the fire pit twice, way too many toasted marshmallows, smores and almost 14 hours of driving.

On another note. work is becoming more and more stressful as we get closer to the offer of a job or you're out of a job stage. Many people I really enjoyed working with are leaving. It's going to be a much different place, if I am extended an offer to stay.

Next week I have appointments for an updated MRI and bone scans followed the next week by my monthly Oncologist appointment. More on that in a later post.

Time is flying, but I hope it's clear, I am taking time to enjoy a little of it!

June 29, 2009

Where have you been?

June has not been a good month for the old blog. I've just been busy and otherwise mentally occupied.

On June 9th my 'Chemo-versary' came and went. It has now been 12 months since I started the chemo treatments. It seems like a lifetime ago.

Tomorrow would have been my Mom's 76th birthday. I find it really strange to imagine over 6 years have gone by since she passed! Talk about time flying!

Work has been a busy distraction. The pending merger was approved and now comes the headcount reductions and people positioning themselves for a role in the new company. I'm not one for 'playing the game'. I hope my historic results stand on their own. This is not to say I am standing by idly, but we'll see what happens.

Next month we are finally going to take some time off with trips to St. Louis, the lake and Minneapolis. We're just not certain at this point when we will do which.

There is also this Disc Golf event in town the last week of July. The World Disc Golf Championship (Professional and Amateur). It's four days and six rounds, and the opportunity of a lifetime. I'm still on the fence but leaning towards doing it!

That's all for now, have to go meet a cute blonde for lunch.

June 22, 2009

Doc, are you serious?

Today was my monthly doctor appointment. I am not sure where the time went...June is nearly over.

For the past weeks I have felt the same, no new aches and pains, no need for Advil or the like. As reported,
my knees hurt but Glucosamine is helping a little. I think chemo pretty much trashed my cartilage. As for cancer related pain, I really have none.

So, on to the test results. A little history; after leaving MD Anderson we agreed to pay more attention to everything going on instead of focusing primarily on PSA.


My PSA today was: 66.14
This is up from 55.13 last month. I was not at all surprised considering I am only taking Lupron at this time.

The three new tests came back looking like this:

Alkaline Phosphate (bone portion) - 6 [very low!]
Circulating Tumor Cells - 0 [excellent!!]

This was all followed by the fact they once again screwed up the forth test (the urine test). I could only ask, "Seriously?". Doc tried to lessen the blow by saying the other markers are indicating good things. I had to just bite my tongue and move on. He promised to write out very, very specific instructions for my appointment on the 14th. I'm not holding my breath.

So then we were off to the treatment center for a shot of Lupron and Zometa [a 25 minute infusion to strengthen my bones]. Turns out someone wrote the orders for next week, so it took 45 minutes to get that straightened out and then another hour to wait for the pharmacy. I'm really finding it hard to be patient in regards to the the service at the cancer center, but I will.

In the end, the plan is this; on the 14th I will have a bone and CT scan. The following week will be my usual four week appointment on the 20th. If at that time, my PSA has continued to climb we might start High Dose Ketoconazole once again. By then it will have been 17 months since I last took Keto and it MAY work again? Like a broken record, I guess we'll just wait and see.

June 18, 2009

New beginnings and some news that saddens me greatly

First and foremost, an early congratulations to my niece Megan and her fiance Alex! This weekend will be absolutely beautiful and may God bless you with many, many, many happy years ahead. The days, weeks and months leading up to Saturday have been hectic and stressful but that will all quickly be forgotten by Saturday and as time passes. Enjoy your honeymoon and the beach. I'm rather jealous of the whole beach thing! Your two are wonderful together and I wish you nothing but the best!
~~~~~~~~~~~~~~~
I received an email yesterday that the teenage son of someone I knew in grade and middle school had died. We were close friend friends for a while, but that was 35 years ago. None the less, this news has really made me sad. This blog contains too many stories about death, both those that I knew or others that I was just merely acquainted with. Perhaps this was just the proverbial straw that brings me so much sadness?

If you have a moment, please say this prayer for the family and the soul of their son.

Eternal rest, grant unto them, O Lord,
and let perpetual light shine upon them.
May the souls of the faithful departed
through the mercy of God rest in peace.
Amen.

June 10, 2009

Nothing in particular

I have absolutely no idea what to write about today? So should I even bother?
Though the doc at MD Anderson said "Go home, live your life for a few months" I can’t help but wonder? At times I think we should be doing something and by something I mean treat this more aggressively. Then I begin to justify our actions or lack of action. My mind is a whirlwind of thoughts at times.This is hard, it's not very enjoyable at times, most of the time. I don’t let it bother me for more than a few minutes here and there, this just happens to be one on those times.
I can't believe it’s been two months since we were in Houston? Seems like yesterday.

This from Joel over at www.advancedprostatecancer.net:
The Simple Facts
* Prostate cancer is a complex and problematic disease that affects not only the male patient but also his wife or partner and other family members over many years.
* Each year about 28,000 Americans die from prostate cancer often a slow and painful death as the cancer spreads to their bones and other organs. (Only lung cancer causes more cancer-related deaths in American men each year.)
* In addition, every year, up to 70,000 men learn that they have potentially incurable forms of prostate cancer that severely impact quality of life and may lead to their deaths.
* By 2020 the number of men being diagnosed with prostate cancer may be as high as 320,000 per year because of aging-related demographics of the American population.
* African-American men have one of the very highest rates of incidence and death from prostate cancer anywhere in the world. They are 1.6 times as likely to be diagnosed with prostate cancer and 2.4 times as likely to die of this disease as (non-Hispanic) Caucasian-American men.
* In nearly every state in America, men who are un- or under-insured are at very high risk for diagnosis of advanced or late-stage prostate cancer.
* Despite recent data and media coverage about PSA testing and prostate cancer mortality, the early detection and appropriate treatment of clinically significant prostate cancer remains a critical priority, especially among men at high risk because of family history, ethnicity, or other factors that define such risk.
* We urgently need better tests for early stage prostate cancer tests that can discriminate between potentially aggressive cancers that need prompt treatment and indolent cancers that can potentially be managed with non-invasive treatments.
* Continuing innovation is imperative if we are to meet the urgent need for treatments that can save the lives and prevent the progression of this disease in men with aggressive and advanced forms of prostate cancer.
* No form of treatment has ever been shown to extend the survival of patients with advanced forms of prostate cancer by more than a few months.

* Every man has the right to know whether he is at risk for clinically significant prostate cancer that might lead to his death.
* Regardless of his age, every man should discuss his individual risk for prostate cancer with his doctor (i.e., his primary care physician and/or his urologist), and request the appropriate use of PSA and DRE tests until better options are available.
* Guidance issued by the American Urological Association in April 2009 (a) emphasizes that “The decision to use PSA for the early detection of prostate cancer should be individualized” and (b) suggests a “baseline” PSA test for well-informed men at age 40.
* Many other professional organizations, as well as the American Cancer Society, encourage discussion about PSA testing between a man and his doctor(s).

June 05, 2009

A long journey, that has just begun.

Tonight our foundation, Faith - Love - Hope - Win (flhw.org) is having our first in what I hope turns into an annual event. A very, very generous man has offered to donate 10 percent of the total sales (between 5 and 8 pm) at his greenhouse to our foundation. The details are within this flyer.

This however is not the point of today's blog. As I was coming into work today I was thinking about tonight and what Bill is doing for us and other non-profit groups here in Kansas City. I was also thinking about all the other people that are helping and have helped over the years. There are the smaller signs of support and large ones and the difference is not necessarily monetary. Sometimes it's the little things that touch me, like the simple beauty of that flyer. The two guys that helped us to design it were were so generous to offer their time and talent. One I barely know, the other I have never met, I don't even know his name.

I guess my points are these; not only am I deeply touched by their kindness and support but I am also rather proud that this little effort Mary and I began four years ago, is starting to gain some serious momentum. True, we'll never be Livestrong or Komen but that is not our goal or our purpose. It would be ideal for the Prostate cancer community if there was a single, national, powerful group, but that might be someone else's battle. FLHW has come a long way in four short years, $100,000 raised is nothing to sneeze at! 2009 however, in the midst of this economy, is going to be our best year yet!

I am wandering in my thoughts a bit today but it is my blog and sometimes I do that. I'd like to once again say thank you to our Board, all the volunteers, sponsors, players, donors and attendees that have helped make each of our events successful.

At times the world can be harsh and cruel and hard to live in. At other times the genrousity and kindness of strangers that reminds me that God put me here to help others and do my best to live a selfless life. For me, it's too bad it took so many years and Prostate Cancer for that to really sink in.

June 01, 2009

1,832 Choices

Over the weekend I finally found the time to pull together all of the pictures from our recent disc golf tournament. Funny how much more time I have when I don't play disc golf!

It turns out I have over 1,800 pictures from the event!
Below is a link to the video. The video is approximately 380 of the best shots with a music
soundtrack to boot. It's about 22 minutes long but well worth your time.

The statistics for the day are in the closing credits so you'll have to watch the whole thing to find out how we did!

May 28, 2009

A calamity of errors

I like to think that I'm a pretty calm, level headed, easy going person and I think those that are close to me would agree. I have come to realize this can create problems, problems that result from people thinking it’s acceptable to provide mediocre service.

Tuesday we went to the cancer center for my four week check up and Lurpon shot. As usual, I went to the lab first to provide a few vials of blood to be sent to the lab. Simply routine I've done this hundreds of times, literally.

Next off was a meeting with the doc, and here is where the frustration began. It was a calamity of laboratory errors to be kind.

First, the two new tests we started last month, in order to track the two markers suggested by Dr. L in Houston, were not completed.

Yes, I wrote that correctly and you read it correctly! Even though I provided specimens in late April the lab completely screwed this up.

The urine test was never run and the lab decided that the blood test to break down alkaline phosphate was not needed. Can you believe this?

Someone in the lab decided that because the total level was within the 'normal' range, breaking it down further was not necessary. I was and remain furious about this one.

After this part of the discussion with the doc there was not much else we could do except provide more sample and move on. Where we moved on to didn’t make me any happier. It seems the blood samples I had provided earlier in the morning failed to include a sample for PSA. Can you believe it? After four and a half years someone forgot to request the blood draw for a PSA, it was simply left off the lab order!

By the way, later on in the day we did get my PSA; it's up to 51.13

Next up, oh yes there is more, was my ankle. This part actually contains good news. I'll just admit it up front; I over did things last weekend. I played disc golf everyday from Friday to Monday, I worked in the yard Saturday and Sunday and over all was on my feet way to long. By Monday night my right ankle, the same one I broke almost three years ago to the day, was pretty swollen. Due to the fear of another blood clot we discussed with the doctor and agreed to run a new ultrasound of my right leg. The good news is nothing was found. After keeping my leg elevated as much as possible over the last few days I can report that it has returned to normal.

Finally, in regards to my PSA, yes we are concerned but we have to stay on track with what we agreed to after leaving Houston. It's a very hard pill to swallow, it creates anxiety, tension, worry, fear and more. That being said we have to remain faithful that the doctors know what they are doing and the Lord is guiding us down the right path.

Many, many thanks to all of you for your continued prayers, they are powerful and help us more than words can express.

May 25, 2009

Short, sweet and to the point

I'm finally resting after four straight days of disc golf and yard work.
It's cool, cloudy and raining off and on, so I'm catching up on paper work
for the foundation and paying bills.

As I sit here I've got iTunes up and just fired up Zac Brown Band, the song Toes. The course contains the line "..life is good today.."

and it is my friends, it truly is good today.

May 22, 2009

Younger Men with Prostate Cancer

I know it's been a while since I had anything personal to say, but I'm just taking the doctor's advice and getting on with living my life (to some extent).

We are in the midst of six incredibly busy weeks; I had to travel twice on business, we had the FLHW disc golf tournament, a graduation, a very special wedding in June that both Mary and I are a part of, wedding showers, rehearsal dinner, another charity event for FLHW, well you get the picture.

Below is an upcoming article that I received from a friend, Skip's Twitter feed.

Hope you all have a wonderful and safe Memorial Day weekend. God bless all the men and women in uniform, both past and present!

Finally - the the lady who commented on my last post, you can send me an email at: 'info at flhw dot org' (spelled out to avoid spammers).
~~~~~~~~~~~~~~
While young men with prostate cancer have a low risk of dying early, those with advanced forms of cancer do not live as long as older men with similar forms of the disease. That is the conclusion of a new study published in the July 1, 2009 issue of CANCER, a peer-reviewed journal of the American Cancer Society. The paradoxical findings indicate that there may be biological differences between prostate cancers that develop in younger men and those that develop in older men, and that uncovering these differences may help tailor screening and treatment strategies for patients based on age.

In general, a younger cancer patient has a better prognosis than an older patient with the same type of cancer. Few studies have analyzed the health of younger vs. older men after diagnosis and treatment for prostate cancer, though.

To investigate the impact of age on prostate cancer prognosis, Daniel Lin, M.D., of the University of Washington and colleagues designed a study to examine the association between age at diagnosis and health outcomes in men diagnosed with prostate cancer in the United States. Mining the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) database, the investigators identified 318,774 men diagnosed with prostate cancer between 1988 and 2003. Men aged 35 to 74 years were stratified by age at the time of diagnosis, and the researchers examined differences in tumor characteristics, treatment, and survival within each age group.

The analysis revealed that, over time, men are being diagnosed with prostate cancer at younger ages, likely due to more extensive screening. Also, younger men are more likely to be treated with prostatectomy, have less aggressive cancers, and have a better chance of survival after 10 years compared with older men. However, among men with advanced prostate cancers, the youngest men (aged 35 to 44 years) have a particularly poor prognosis compared with older men. These young men are more likely to die from cancer or another cause sooner than older men with similar forms of cancer.
While the reasons for this unexpected finding are not clear, the researchers suspect that young men with advanced prostate cancer may have biologically more aggressive forms of the disease than the forms that are diagnosed in older men. Additional studies are needed to determine what, if any, underlying differences exist between advanced prostate cancer found in young men vs. those found in older men. These studies may help clinicians improve screening in young men and could ultimately lead to the development of better treatment strategies for these patients.

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Article: "Treatment and survival outcomes in young men diagnosed with prostate cancer: a population based cohort study." Daniel W. Lin, Michael Porter, and Bruce Montgomery. CANCER; Published Online: May 22, 2009 (DOI: 10.1002/cncr.24324); Print Issue Date: July 1, 2009.

May 19, 2009

Words to live by...

It's been a long time since I created a 'wordle'. If you are familiar go to www.wordle.net. You can link to a blog or just provide a list of words. This was created using all of the tags I have used in my blog over the years. Click for a link to a larger version.

Wordle: Prostate Cancer

May 10, 2009

Caution - flying plastic!


This evening, twenty four hours later, I still find myself exhausted! However, without a doubt, it was worth every minute, every step, every throw!

Yesterday we held the 2nd Annual FLHW Disc Golf Tournament. Though the weather started off a little cool and breezy, by mid-day, the winds subsided, the clouds passed, and the sky was a clear blue with a warm sun shining down on us. The day ended up being absolutely perfect.

We had 78 disc golfers and were privileged to play on a private course, located on an unbelievable piece of property here in southern Johnson County, Kansas. The owner is a wonderful and extremely generous man to whom Mary and I owe much gratitude.

I'll provide more details and many, many more pictures in a few days. We are very pleased that we raised somewhere in the neighborhood of $3,000. All of which will be donated to the Prostate Cancer Foundation (PCF) to support the research needed to develop improved treatments and a cure for advanced Prostate Cancer.

Mary and I would personally like to thank each of the Board members who generously dedicated their time to making this event a success, all of the sponsors, volunteers and players that shared in our mission for a cure. God bless all of you!