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.

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!

Fwd: There will be tears.

I have been in Orlando all week, away from Mary and Brad.

During this time and as I mentioned in my last entry, we lost a dear friend.

I haven't really had the opportunity to reflect and let the memories flow or to take a minute to be, if nothing else, sad.

I sense that tonight, after Brad is asleep there will be tears.
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Tomorrow will be crazy busy as Mary and I prepare for Saturday's second annual FLHW disc golf tournament. At this point I would guess we will end up with close to 100 disc golfers. The weather is supposed to be ideal, the anticipation is unbearable at times. I look forward to the day and once again having the opportunity to promote the need for early detection and support of the research to find a cure for PC.

Pictures and a full update in a few days.

Peace be with you my friend

We are saddened by the news that our dear friend Mark B passed away yesterday morning after battling Sarcoma. We are comforted that he is no longer suffering and continue to pray for Beth, Tony, Nick and Erin that they will continue to find strength and comfort in the many wonderful memories they have shared through the years. Mary and I cherish the many good times that we have shared with them and will always have a special place in our hearts for Mark.

**********************************

Absolve, we beseech Thee,
O Lord, the soul of Thy servant Mark,
from every bond of sin,
that being raised in the glory of the resurrection,
he may be refreshed among the Saints and Elect.
Through Christ our Lord.

Amen.

Aussie and Hawkeyes

I find myself a little somber this morning. Even though a week of rain has finally broken, emails
and news of the health of a dear friend have me wondering.

This first is an email from a great guy in Austrailia. Terry, a PCa survivor. He runs this great website, "You Are Not Alone" or YANA. I found it four years ago when I was first diagnosed. It really helped to read stories of other men, with similar diagnosis.

Terry recently wrote his thoughts on death and dying:
http://www.yananow.net/elephant.htm

I have only read parts of it, as I can't make myself read it all. The piece has stirred up a lot of
fantastic conversation.

The second bit of news requires a call for prayers. A dear friend of ours is battling Sarcoma.
He is home with his family and hospice has been brought in to assist. His dear wife is seeking
the help of one more hospital and I ask you to join me in praying that they are able to offer help.
He is a wonderful man, with an infectious smile. Though we haven't seen them recently, I can picture his face and see his smile as if he were sitting right here with me this morning.

This is for you Mark, go Hawkeyes!

Prayer to Saint Peregrine ~ Patron Saint to cancer patients
O great St. Peregrine,
you have been called "The Mighty,"
"The Wonder-Worker,"
because of the numerous miracles
which you have obtained from God
for those who have had recourse to you.

For so many years
you bore in your own flesh
this cancerous disease
that destroys the very fiber of our being,
and who had recourse
to the source of all grace
when the power of man could do no more.

You were favored with the vision of Jesus
coming down from His Cross
to heal your affliction.

Ask of God and Our Lady,
the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession,
we shall sing to God,
now and for all eternity,
a song of gratitude
for His great goodness and mercy.
Amen.

A repeat performance? and Sea Creatures

Sunday is the 2009 Kansas City Corporate Challenge Disc Golf event and my friend Gary and I will be defending our gold medals. See this post; 'We are the Champions..."

I'm not expecting a repeat, since I really haven't played very well the last few rounds. You can bet though I am hoping for a turn around by this weekend!

Not that it's an excuse or that it has impacted my game in any way, but my knees have been hurting. It started when I came off steroids after concluding chemotherapy. It primarily hurts when I sit for a while or after sleeping. The more active I am, the less I notice it. I tried to use this as an excuse for more disc golf, but Mary wasn't buying it.

My docs weren't much help (it's not their specialty) except to suggest I see an Orthopedic Specialist if the pain became too severe. Monday I asked a few runners I work with and they all suggested Glucosamine.

Glucosamine is a compound found naturally in the body, made from glucose and the amino acid glutamine. Glucosamine is needed to produce glycosaminoglycan, a molecule used in the formation and repair of cartilage and other body tissues. Production of glucosamine slows with age.

Glucosamine is available as a nutritional supplement in health food stores and many drug stores. Glucosamine supplements are manufactured in a laboratory from chitin, a substance found in the shells of shrimp, crab, lobster, and other sea creatures.

Though I've only taken it four times, I already feel the difference! I only hope it continues to get better as I continue to take it.

Summer time, summer time, sum-sum-summer time!

On Monday we met with Dr. V for my monthly appointment.

PSA = 39.75

This is up slightly from four weeks ago (36.16) but not significantly.
He reviewed the letter from Dr. L at MD Anderson and we discussed the recommendations at length. He is in agreement with the recommendations and he ordered the two new tests. We will use a combination of these three tests two determine when we make our next move.

I already have total alkaline phosphates measured each month as part of a standard CBC Blood panel but the first new test will break it down further. Here are some details from my friend Howard at hrpca.org:
Alkaline Phosphatase, serum Bone-specific alkaline phosphatase (BAP.) When alkaline phosphatase is measured, it is actually the sum of the bone-specific and liver-specific components (isoenzymes.) BAP can indicate excess osteoblastic cell activity which may indicate bone metastases. Metra Systems, Inc., says that Bone Alkaline Phosphatase is an osteoblast membrane-bound molecule which is involved in bone formation. Levels of this enzyme are thought to be indicative of the activity of osteoblasts.

Another description of AlkPhos is that it is an enzyme that is found on the surface of osteoblasts(the cells that build bone) and as such is used as a serum marker of increased osteoblast activity. Since bone is being added at prostate cancer bone metastases, an increased alkaline phosphatase can mean increased bone met formation. A recent paper by MR Smith et al in Urology discussed BAP and NTx in their role as predictors of skeletal complications in HRPC patients (MR Smith, et al, Urology 70: 315-319, 2007.) Their conclusion was that elevated baseline levels of BAP are associated with a greater risk of adverse skeletal outcomes - events such as shorter time to radiotherapy or shorter time to first pathologic fracture. NTx was also found to be of value in monitoring patients on bisphosphonates.

The second new test will measure the amount of CTC's or Circulating Tumor Cells. Recent studies suggest that for men with advanced disease, measuring whether the number of cancer cells circulating (CTC) in the blood stream is rising or falling may be a more accurate method for determining response than PSA. CTC’s are found in many cancers but are most common in prostate cancer.

So we ran both tests in order to establish a baseline and I will have the tests repeated in three months along with an updated bone scan and MRI. So unless my PSA goes crazy or I develop pain somewhere, no foreseen changes for the next three months.

Not sure if you caught that, three months, as in July!!!

Woo-hoo!!!

Spring and a few other things

This might finally be the week when we put winter behind us. I say that with some trepidation, not wanting to jinx things. I planted spinach about a month ago and it is finally making some real progress, however harvest and a fresh salad from the bounty are weeks away.

We played in a rain soaked disc golf tournament on Saturday and I hope to get out a few times this week and weekend. Additionally, plans are well under way for our second annual FLHW disc golf tournament on May 9th. Details are at http://www.flhw.org/2009discgolf.htm

Since returning from Houston, I've really been trying to take the doctor's advice to just get on with it. We have been really wanting to get back to Florida and may try to plan a trip for when school gets out. I could use some sand between my toes!

My next appointment with Dr. V is next Monday and for once I am not real concerned. Well maybe just a little. There is potentially some good news on the horizon for those of us with advanced prostate cancer.

I've written about this new drug, Provenge, a number of times over the years. My first post on Provenge was on October 24, 2006. Next week the company is scheduled to announce the results of their Phase III trial and rumor has it, the news is good. What that means is, in the best case scenario, the drug may be available in the first quarter of 2010. Available and approved or paid for by insurance are two completely different things as well. It is still good news and apparently there may be more regarding other treatments in the months ahead. Again, nothing curative, simply drugs or treatments that may extend the life of those with advanced PCa.

And now for today's dose of emotional stew

I'm sure many of you have seen this:
Susan Boyle

If this didn't make you laugh, cry, cheer, I'm not sure what would.
As I watched this it made me thinkabout how sad it is that we are such a judgemental society. Yours truly included.

I know this has nothing to do with Prostate Cancer however, I wish this woman the best and hope she goes on to become a big, big star!!

Eggs, and bunnies, and candy oh my!

We made it home safely on Friday, but not in a timely manner. Southwest Airlines, who I usually find to be reliable, did an absolutely miserable job of getting of us home. I'll forgo the details, but it involved delays, missed connections and arriving home six hours late.

I played disc golf yesterday and today with the gang. I really need them and appreciate them in my life. I am trying my best to take the doctor's words to heart and just get on with my life. Easier said than done!

Today is about the Lord and family and now relaxation with just Mary and Brad - this I also need!

Happy Easter everyone, peace be with you all.