Like I needed this, now

83 - that's my PSA number from Monday. The doctor wanted me to start 1,200mg of Ketoconazole and Hydrocortisone immediately. We are going to wait until after Monday when we have a meeting with a group of doctors at the University of Kansas Medical Center for a second opinion. If the above drugs aren't successful in getting my PSA back down, the next step is chemo. Kytocerasol can be very hard on your liver we want to be double sure that this other group of doctor's agrees.

I'm numb. Work is unbelievably busy the past few weeks and with all the efforts going into the golf tournament I'm exhausted. I also started getting some pain in my legs. This time it is both sides, mostly my thigh bone, not the joint like a few weeks ago. It is likely a side effect from the Zometa, Advil is working for now. It had better not impede my golf swing!

Peace be with all of you!! Through all of this I find time to realize; life is wonderful and I'm currently having the time of my life. I love being busy, just ask Mary! Like my dad I can't sit still for a minute, always the busy bee!

Golf Tournament Live Auction List

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
- 8x10 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, tomorrow and beyond

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.

Get by with a little help from my friends.....

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.

You say Zometa, I say Zamoto

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.

9.11.01

I was at work when I received a call. A friend told me, "A plane just hit the World Trade Center! No, I think it's a commercial airliner!". I don’t remember much else about work that day, standing around, looking at the television monitor, wondering if they were going to do the same in KC, St. Louis, Chicago, etc.

Five years, I can’t believe how fast it went by and how much things have changed. The world is so different, my life is so different. Brad is twice as old as he was at that point. We shielded him from it, at five it was very difficult to explain why someone would hijack a plane and fly it into the World Trade Center, Pentagon and White House (where flight 93 was rumored to be headed). It’s hard to explain to a five year old...it's hard to explain to a forty year old!

God Bless America
~~~~~~~~~
I'm all but certain I fell into the mental trap of relating every ache and pain back to cancer. While the pain in my hip and into my leg was exaggerated by the cancerous cells in my hip, I believe it was caused by my overzealous attempt to exercise in St. Louis, by taking a quick run on my Dad's tread mill. Since the pain flair Wednesday afternoon, I have taken it very easy. Not a disc was thrown over the entire week-end! I have only taken Advil twice since Friday and gave up the heating pad then as well. I worked out this morning from the waste up and played golf this afternoon. Although I was cautious, I was able to play and enjoyed the afternoon on the course. Lesson learned - I have to take it a bit easier. (Not an easy lesson for me!) We hope that when I begin the Zometa, the areas of bone that are compromised by the cancer will be filled in and strengthened. My first infusion will be on Monday, September 18th.

Me, wearing less than my birthday suit!

It's kind of weird to post this, but aren't some of my other posts weird as well?

At the left is a copy of my most recent bone scan. The black spots on my left rib cage and hip (right side on the scan) are the ones of most concern. Not all the dark areas are bad; look at my skull, knees and shoulders for example, those are shadows. It's strange there is a noticeable area on my left hip but the pain I've been experiencing is on my right side? I've read and experienced it many times, there is a tendency for those who have cancer to attribute every ache and pain to the cancer! Perhaps it is a muscle pull?

Leg update: the past two days have been much better. Thanks to the advice from the nurse, I started taking Advil as soon as it starts acting up. Apparently Advil can take up to forty five minutes to kick in and I was obviously waiting far to long before taking it. Sleep the last two nights has been worse, more tossing and turning, the only position I can find comfort is flat on my back. I've completely skipped working out the past two days as well to make sure I do nothing to aggravate the area.

My first Zometa treatment is now scheduled for the 18th and my next blood test the 25th. Followed up by a doctor appointment on October 16th and my second Zometa treatment the same day.

Brad turns 10 tomorrow!!! It's amazing how time flies...I love him so much...

Doctor, Doctor give me the news....

We met with my new Oncologist this morning and there is some good news, no chemo for now.  He apparently has more direct experience with Prostate Cancer than our previous Oncologist and would like to try a few more things before we proceed to chemo.

Step 1 - stop taking Casodex again, test my blood in two weeks and then again four weeks later.
Step 2a - if this works, ride it out again and see how long we can keep my PSA in check.
Step 2b - if not, before chemo try one more drug that has shown some limited success:
Ketoconazole (Nizoral) Produce response similar to that of antiandrogens. Inhibit a variety of cytochrome P-450 enzymes, including 11beta-hydroxylase and 17alpha-hydroxylase, which in turn inhibit steroid synthesis.

We need to do some additional research on the drug, one of the main things it prescribed for is "anti-fungal"? However, if we proceed and we see positive results from Ketoconazole, again, ride it out for as long as we can.  If we don't see the results we are looking for, well then we cross the chemo bridge. 

According to the doctor, there is no risk in six to eight weeks versus now. If  the bone metastasis was extremely aggressive, we'd begin right away.  But since my recent scans show only a slight  increase in activity we agreed with his recommendation to at least try this regimen first.

The bottom line is chemo is off, once again, for at least 6 weeks, 8 weeks, maybe longer?  On one hand it's a tremendous relief to us both.  On the other hand we have left the station for another ride on the emotional rollercoaster!  The stress of this cannot be conveyed via this blog.  It's constant, it's a burden, it's something we deal with constantly….in between holding down a job, raising a son, running a foundation……breathing…..

We are going to proceed with the Zometa treatments.  This is a drug used with Osteoporosis to help strengthen bones.  In prostate cancer patients (advanced) it helps fill in the areas the tumors may have weakened.  It a fifteen minute procedure give via IV.  This will commence on Monday or Tuesday of next week.

__________________________
We discussed the leg pains.  After work yesterday they were pretty bad.  The sofa, the heating pad and 800mg of Advil and an hour later I was fine.  Last night I slept very well again as well.  This morning I was able to work out without an issues (upper body only).  He moved and bent my leg and asked me if it hurt?  Of course it didn’t at that time, he thought perhaps I pulled a muscle?  As you'll see, I'm not sure I agree with that diagnosis?

I decided to work from home today.  Everything was fine until about 12:15 when it began to hurt, the heating pad didn’t help, neither did the dose of Advil at 1:30.  By 2:00 I was laying on our bed in agony, it was so bad I couldn't call the doctor.  It did subside enough that twenty minutes later I called and left a message with the nurse.  By 3:00 I was able to do some work. I moved to the couch because it seems to be more comfortable overall and things have been good since (three hours).

I'm not sure what we'll do about the leg?  It's weird that it comes and goes?  Perhaps one on the tumors is pressing on a nerve?  I wonder if radiation is in order?  I hope to doctor calls back soon, I don’t want another flair up tonight….or ever!  That was perhaps the worse pain I have experienced in a long time, in my lifetime.

Slight Pain Redefined

What began as a slight discomfort in St. Louis had turned into out right pain.  It had completely gone away by Sunday morning so I played disc golf with my brother-in-law.  We both shot 1 over par and I did so with not even a twinge. However, by mid-afternoon Sunday I was hurting.  I tried Aleve but it provided no relief.  By Sunday after dinner I was on the couch with a heating pad on my leg. Four Advil later it was bearable. 

Sleeping on the other hand was a task.  Mary and I were both up from about 2:30 to 4:00am.  Monday morning was somewhat better and I was able to last until noon before I had to reach for the Advil.  Last night I must have found the one position on my side that relieved the pain and was able to get a good night’s sleep.

I was able to work out (no leg exercises at all) and am doing ok this morning as I work from home.  Tomorrow at 8:30 we meet with the new Oncologist.  We also did receive a call from the previous Oncologist regarding clinical trials, etc. at MD Anderson or Sloan Kettering.  Her message indicated that both doctors she talked to were also of the opinion that the Taxotere regimen is the best next step.  My guess is, upon leaving tomorrow’s meeting, we will receive confirmation again that the chemo treatment will begin the following week.  We will also inquire about the pain and the need for any radiation treatments.  I’m not sure why but I’m less concerned about chemo than radiation?  It just sounds nasty?!

A brief update

Yes, I'm wearing them! (for those of you who might not get it right away...like my wife...refer up to the title!)
OK, I admit it, it's not that funny!

The nurse called yesterday with the results of Wednesday's test. The CT scan is still clear, no activity in organs, lymph nodes etc. The bone scan showed no new areas but a slight uptake in activity in several areas, mostly around both hips. WIth my PSA rising as it has, this is not unexpected. Also, this probably accounts for the slight pain I have been having in my left thigh. That and the fact I ran 1.3 miles on my Dad's tread mill yesterday. (Mary is NOT happy!!!) No more tread mill or running for me. No more exercise bike, per my Urologist (it can really screw up PSA readings). This leads to two things: anyone want to buy a practically brand new Schwinn stationary bike? It comes with an extended warranty, less than 6 months old, programmable, it's very nice!!? Second, any ideas on a good low/no impact cardio workout?

The family in St. Louis is fine. We even got to spend a few hours with my sister and brother in law from Ohio on Wednesday night and Thursday morning before they drove home. We attended a very nice service for Grandma. The flowers were beautiful. She would have definitely approved. She loved flowers. As time passes and our focus adjusts from loss to comfort in many wonderful memories of her, we will be content that she had a wonderful, full life and we are very fortunate to have been a big part of it.

Eleven of us went out for dinner last night. As typical of most familes, our diversity showed in the food we ordered: steak, chicken spedini, grouper, canneloni and pasta con pollo for me. It was a beautiful night, we sat outside at a small restaurant in the Soulard area. On the way home we drove by the new Busch Stadium (where the Cardinals were beating the Marlins!!), it's a beautiful stadium at night, even from the limited views we had. I wish we had enough time to take in a game. I need to take Brad to a night game there Of the previous games that we have attended at Busch, they were always day games.

Enjoy your holiday weekend!!!