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.

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.

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!

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!

Pints for Prostate

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

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.

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."!

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

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

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!!

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!

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?