Yesterday’s transfusion went off without a hitch.  Before hand, we briefly met with Dr. H.  He asked if I was experiencing any side effects from the Ketoconazole (I’m not) and how I was feeling in general.  We also discussed the clinical trial at KU Medical Center as those doctor’s had sent him a letter after our visit a few weeks back.  He was in favor of us pursuing the trial.  He also told us not to expect too much from next weeks PSA test.  As much as the number fluctuates, it could go up at first.  If it does, the PSA test I have on 11-13 will likely be the final indicator.  If my number is up next week and in November we will proceed to chemo (my thought is as quickly as possible!).  

Being that I was due for my Lupron (Hormone Therapy) shot we made a quick call to Dr. Davis’ office and caught Nurse Mel at the St. Luke’s office, it happens to be right across the parking lot from Dr. H.

So we killed two birds etc…  This shot is always fun, leaves the gluteus maximus a little sore for two or three days!

"How was your day?" Just a typical Monday, and you?

One thing that has changed throughout this crazy journey is my diet.  I’ve touched on it briefly from time to time, but never provided very much insight.  If you have any interest in what changes I have made, to maintain a more healthy weight, here is a list of the foods that are now staples in my diet:

– gala apples
– baby carrots
– sushi (just the fish on rice, with wasabi!!)
– Pad Thai with chicken and shrimp, medium spicy
– grilled Salmon and most any grilled fish
– asparagus, anyway but raw
– broccoli (steamed)
– raisins
– pasta. (I always loved pasta, now I avoid the white sauce and use no cheese)
– chicken…..did I mentioned chicken, and then there is chicken.

This diet limits our options with the exclusion of beef, pork and dairy, but when you are married to "the woman with 10,000 recipes", it never gets boring.

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I mowed the grass this weekend for the first time in almost two years.  In the spring of 2005 we decided to have our fifteen year nephew mow for us.  He liked earning some cash, and I needed one less thing to strain my back.  Well he was out of town this week-end and I have been feeling great for the last ten days, so I thought I’d give it a whirl!  I’m glad to report I had no issues with pain later on Saturday or Sunday!!  This may appear to be no big deal but it is a rather significant step.  No, I’m not for hire…..

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In approximately 3 1/2 hours I’ll be in the process of being injected with my second treatment of Zometa.  The treatment itself is nothing; a small bag of fluid (maybe 12oz?) provided intravenously.  The whole process takes less than thirty minutes.  What followed last time was not so easy.  Three to four days after the infusion I had pain in my ribs for a few days and then pains in my legs for about a week. Though the pain was relatively mild, and easily controlled by Advil, it was accompanied by an increased level of mental stress.  She doesn’t mention it, but I can tell it weighs heavily on Mary’s mind.  For me, it just causes second guessing about what’s really going on inside my body.  Is it the Zometa working? Is it a sudden turn for the worse? Etc..

Having gone through this four weeks ago, a least we will know what to possibly expect.

If it is a side effect of the Zometa, that is fine. The Zometa is strengthening the areas of bone that have been compromised by the cancer cells.

…and I pray I never find it!!!

First, let me be clear, I am not saying I am Superman.  What I am saying is this, I am experiencing no side effects after one week of the new drug regime.  Zero nausea, no additional fatigue, I’m not any more tired than usual.  I’m just praying that the drugs are actually working, I’d like to keep chemo at bay for as long as possible.

It’s Fall.  The trees are changing here in Kansas City.  It happened real fast this year, at least it seemed like it to me.  One week it was 95 degrees, the next week the trees are yellow, orange, red, etc..  As I posted before, I love Fall, but prefer Spring.  It’s just that Fall, with it’s beauty fades too fast and leads into the doldrums of Winter. Spring is about new life, the return of the beauty of nature and so on.  I hope to find the time this coming weekend to get outside in the woods to enjoy the colors, I hope we have a good weather weekend ahead.

I spent this past weekend working on projects around the house and playing disc golf, twice.  It was a small crowd this weekend, but I played remarkably well after taking two weeks off.  There were only four of us on Saturday and three yesterday, I won both times, throwing a three over par on Saturday and two over yesterday.  Not bad considering I only had one birdie, just a whole lot of pars!  I’m already looking forward to next weekend and it’s only Monday!

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We should have a final update on the final count of the golf tournament, there are one or two checks still outstanding and the details of the golf course invoice are in the mail.  In the end, I’m pretty certain we will make our goal of $20,000 donation to PCF (to be matched dollar for dollar via the Prostate Cancer Foundation).

I finally got a video tape of my second television appearance from back in August.
It was August 10 and this is from ‘Kansas City Live’. It will be permanently linked to the right, or you can view it right from this post. Just click on the arrow.

First and foremost, medical update.
Mary and I just returned from KU Medical Center where we met with Dr’s Van and Helz, two very, very nice chaps. We were both very impressed, and both of us liked their personalities, bedside manner and progressive approach to treating my case. We are seriously contemplating transferring to them as our primary oncology team.

1) They agreed that starting the Ketoconazole was a reasonable next step – they also minimized in our concern with the risk to the liver as a side effect. It occurs in few cases. My monthly blood test for PSA will now include other analysis that will indicate any potential impacts to my liver. If indications result in concern that my liver is adversely effected, I will stop the Ketoconazole. The potential damage to the liver is not permanent. They were clear however, that because the hormone blockers were only effective for 18 months, the possibility of long term success with Ketoconazole is pretty low. However, every case is different, so we all agreed to proceed. I’ll start taking the Ketoconazole and Hydrocortisone tonight followed by a PSA and liver screening in 4 weeks. If my numbers come down, we’ll reassess and run the same tests several weeks later. If my number does not come down, we’ll likely go directly to #2 below.

2) We discussed a number of clinical trials, standard treatments, etc. These two doctors were more in step with current trials and leading edge treatment protocols, than any doctors we have met with yet (no offense to anyone, they work in a research hospital, they should be!) The good news is the one trial that Mary and I have had the most interest in (Taxotere and DN-101, a concentrated vitamin D compound) is within weeks of being brought to KU Medical Center. The nearest other location is St. Joseph, Mo or Columbia, MO. 90 minutes and 120 minute drives, respectively. The timing could work out to be perfect. It is NOT a placebo controlled study , but there is a control group. What that means is , if I am selected, I’ll know it right away because the control group has the standard treatments every three weeks and the trial group gets the Taxotere/DN-101 treatments weekly. Only time will tell.

So we have started a new regimen and a new chapter in our battle against this horrible disease. We ask for your prayers that it will be effective in managing the growth of the cancer cells and have hope that we are on a path to remission.

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The Golf Tournament was a tremendous success. We were blessed with beautiful weather and a crowd of 140 golfers, four short of a full field, due to a few last minute cancellations. Everyone seemed to be enjoying themselves while supporting a very worthy cause. We still have a few bills to pay and checks to deposit so I should have the final tally before the weeks is over. If we don’t reach our goal of a $20K donation to PCF, we will be REAL close!

I owe so many people thanks and recognition but I think I’ll save that for another post. I cannot adequately articulate my gratitude to all the players, volunteers, sponsors, friends and family that made this day possible.

The days leading up to the tournament were very hectic with last minute details, coupled with family and friends in town all weekend, Mary and I were wiped out by last night , but it was a ‘good tired’. It may take us a day or two to fully recover!

As I mentioned a few posts ago, here is a list of items that will be included in the ‘Live’ auction after our golf tournament.  Let me know if you have any interest.

Here is what we have:
– Autographed Albert Pujouls Baseball
– Autographed George Brett Baseball
– Seat back from Busch Stadium, seat #6, autographed by #6 Stan Musial (On a wooden frame, ready to mount)
– A replica putter autographed by Arnold Palmer
– 8×10 color photo of Lance Armstrong, autographed, framed and matted
– A weekend for two in San Francisco (2 Nights at the Downtown Hilton, up to $500 in airfare)

Tonight Mary, Brad and I are headed to the post ride event for “Sunflowers to Roses” (http://www.sunflowerstoroses.org/). This is a local KC cycling group that raises money for the Lance Armstrong Foundation and other cancer related causes. Each year they have a post ride event and present their ‘Carpe Diem Award’, which honors those who, ‘Seize the Day’. Though I was nominated, which I appreciated, I did not win the award. We were asked to attend as VIP’s. Brad thinks it’s pretty cool. Details later.

Tomorrow, and pretty much the rest of the weekend will be spent in preparation for next Friday’s golf tournament. We have to finish printing player handouts and stuffing 144 player bags. The actually stuffing is real quick, the prep takes some time. I just pray next Friday is as beautiful as today. It was one of those fall days kissed by God’s lips….I should be playing golf today!!

Last night I attended my second PC support group meeting. As I wrote back in June, the room consisted of 50 men my dad’s age and older. I went primarily to give one of our hats to the AstraZeneca representative for his help getting us a sponsorship for the tournament. The scheduled guest speaker sounded interesting as well; a local Urologist who has Prostate Cancer. Well, he didn’t show up. He was apparently still at the hospital. The meeting turned into a Q&A with the nurse practitioner and was somewhat interesting. However, at the end of the meeting she stopped the group and said “You know it’s been about six or seven months since we talked about this, we see the Susan B. Komen information everywhere, what are we doing about Prostate Cancer? What are any of you doing about it?”

It was like I was invited to be there…hello? Do I have a story for you people! I briefly told them about myself, the foundation, golf tournament, the amount of money raised last year, this year’s goal and that we had bigger ideas in mind. Our next step is something bigger, like a race/walk. “Would any of them be interested?” I’ll cut this short, but I left feeling like there were at least 40 men in that room that were just waiting for something like this, waiting for someone to take the lead and push them into the pool.

Remember what I said way back in the Spring of 2005 – “I didn’t get cancer, it was given to me” I thought I knew why and this just reinforced my suspicion. I may have just stumbled upon another reason, a crowd, a group of men suffering from the same dreaded cancer, looking for a reason to get involved, to do more. If they are willing to sit around a lecture hall one night a month and discuss the disease, the tests, the treatments, the side effects, the whole sorted mess, perhaps they will do more? Now I just need to find the appropriate way to motivate them to take that passion to the streets, to do more, to tell these same stories to others.

I might as well dream big people, at times there isn’t much else to dream about.

A very good friend, that I met becasue of this blog, needs your help.
John W. (a link to his blog is at the right) is participating in the Light The Night Walk. It is one of the major fundraisers that the Leukemia and Lymphoma Society (LLS) has each year (at many locations around the country). John will be participating in the local walk in Austin at the Dell Diamond on October 28, 2006.

John has set a personal goal to raise $1,500, please do what you can to help him reach his goal!!!

He didn’t ask for my help, so let’s not tell him!!!!

Click here to supoprt John W.

We went to the Oncologist’s office this morning. I received my first Zometa infusion. Nothing eventful to report.
I may experience some aches, much like to flu. 4 hours later, I’m fine so far!

Played disc golf Saturday. I really wanted to test my leg. I played pretty bad…I’ll just use my leg as an excuse.
I was careful not to throw too hard or put too much strain on it, so I had to alter my technique. It was fun, hadn’t seem some of the guys in over three weeks. Later Saturday and even Sunday morning I required no Advil. In fact, my leg felt better AFTER I played. No changes since.

The preparation for the FLHW golf tournament continues. We are sold out! 144 golfers, a number of sponsors and a huge raffle. In addition we have 8-10 items for a live auction including a weekend for two in San Francisco! I’ll provide complete details in the next few days. If you’re not playing and want me to be your proxy, let me know after you see the list! The list of companies and individuals we need to thank continues to grow. At this point I just hope we make our goal of $20K for the Prostate Cancer Foundation!!! They currently have a wonderful matching program from a very generous supporter, who is a PC survivor. He will match the donation dollar for dollar, so we actually could be looking forward to a $40,000. donation! Making this type of donation reinforces my hope for better treatments and a cure for this horrible disease.