disc golf

The brick wall

chemotherapy, David Emerson, disc golf, FLHW, Jack Johnson, Journey to the Center of the Earth -

So last week caught up with me on the back 9 Saturday morning. I played pretty good on the front but when we made the turn, my body and brain forgot to follow! I flamed out due to a combination of wicked summertime humidity and overextending myself!

Just to recap last week:
Monday: Chemo treatment #3
Tuesday: Work day, then Tom Petty concert after 3.5 hours of sleep
Wednesday: Work day, 9 hole golf league after 5 hours of sleep
Thursday: Work day
Friday: 1/2 Work day, then 18 hole golf tournament
Saturday: usual disc golf round, then I took Brad to see “Journey to the Center of the Earth” in 3D

So by yesterday, Mary was none to happy with me, and frankly, I can’t blame her. However, I have always been this way; I can’t just sit around, I have to be doing something. Even yesterday, I had breakfast with a PCa friend, went to Mass and then I went to serve my time under house arrest. I worked on bills, the FLHW.org Foundation business and did a few loads of laundry. Just “took it easy”!

So we reach Monday. I got a great nights sleep, worked out and gave my blood sample this morning. I feel so much better than Saturday or Sunday.

I really don’t have a conclusion here? I guess I’ll just say this “Mary, I promise the week after my August 11th treatment, I will take things MUCH easier than this week!”

That is, unless Mark calls me with an 11th hour cancellation to the Jack Johnson concert on the 15th!!!!

OK, just kidding Mary…..sort of…..

Did you ever want a disc of your own?

Advanced Prostate Cancer, Charity Disc Golf, David Emerson, disc golf -
We have a few of the discs from our disc golf tournament left over.
Click here: http://www.flhw.org/2008discgolf_forsale.htm

Since these were already paid for with the donations and proceeds from the tournament,
all the money goes directly to the Faith – Love – Hope – Win Foundation!

39…48….Whatever

Advanced Prostate Cancer, disc golf, medical port, University of Kansas Cancer Center -

So today was monthly update day, month number 39!

First of all the trial, being what I believe to be a typical trial, works like this;
– I have to be off Nilandron for 6 weeks BEFORE I can enroll. That wasn’t clear until this morning.

I did a good job of biting my lip when the trial manager explained this to us. So now I will have bone scans, CT scans and a chest x-ray on June the ninth and my first treatment in conjunction with my 40th month appointment on June 16th.

I did receive my PSA, it’s up again to 48.87. I suspected it had climbed as I have had a few twinges lately that I knew meant something. Not pain but just little things that after three plus years of this were signs.

I’m going to call Dr. Van tomorrow to make sure we are OK to wait another four weeks? I just don’t want my PSA to climb much more. My guess is that is the risk we take, I’m not sure I’m comfortable with that as I write this tonight?

I’m off to a baseball game, perhaps two hours of 11 year old baseball will take my mind off this for a while……

BTW – the port was awesome!! No needles in my arms and tomorrow I will test my ability to throw a disc again!

Historic Data:
5/19/08 48.87
4/21/08 38.31
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)

Chopsticks

Big and Rich, Cardinals, chemotherapy, disc golf, i, Kansas City Disc Golf, PCa -

Mary, Brad and I watched the movie “Big” on Friday night. I must have seen this movie fifty times. I still love it every time. The scene that takes place in the FAO Schwarz toy story is one of my favorite parts of the movie. I’m not sure why? Perhaps it’s Robert Loggia acting like a little kid with Tom Hanks as they play ‘Chopsticks’ on the big piano.

On another note, here is yet another example of the irony of what I am going through. As I’ve mentioned my PSA continues to climb and on June 9th I will begin Chemotherapy as part of a clinical trial. So what does one do when facing events like this? How about play disc golf three days in a row!

On Friday I played nine holes and qualified (along with my friend Gary) to represent our company in the ‘Kansas City Corporate Challenge’. The event, is like a corporate Olympics and lasts for several weeks. The men’s disc golf event is next Sunday morning.

Saturday, most of the usual gang played and I got a little lesson from young Joe….I added about fifty feet to my average drive! The rest of my game needs a tune up but my drives are looking good!

Even after 5 hours working in the yard yesterday, I played again today with Pete, Joe and Steve. We played at a course I haven’t played at since last summer. This course is longer and harder than our usual course but I shot really good on the front nine but two bad holes on the back cost me a good round.

So after that lead in, one that was probably much too long, I recant – after what I am going through with Prostate Cancer, I can’t believe I played three days straight AND worked in the yard yesterday? Is this crazy or what? No fatigue, no pain…..no worries!!

And now we reach the point where I wax philosophical…..
We are on the 10th hole yesterday, Steve and I started discussing this one particularly loud sound bird. After locating a stunningly beautiful male Cardinal we further discussed the fact that unlike most birds, the male Cardinal is the more colorful bird.

Big deal right? Then yesterday afternoon, I take a break from mowing the grass and I’m sitting on the back steps and I hear the same song. No sooner do I find the Cardinal when up flies his mate. They sit there for a minute or two and off they fly together.

I wish there was more, but that’s the story, just a moment of time from a beautiful spring weekend.

Two, two, two posts in One!

chemotherapy, disc golf, FLHW, Kansas City Disc Golf, Nilandron -

First and foremost, here is a treatment update. After researching the proposed clinical trial, Mary and I decided it is worth the potential upside and we are going to participate in the trial. I spoke further with Dr. V only to discover I have to be off Nilandron for at least six weeks. I will stop taking it on Sunday, which will make my first treatment date Monday, June 9th. Treatments will continue once every three weeks for up to twelve treatments (or thirty six weeks). If I am able to stay on schedule, dependent on blood counts maintaining normal range, I will have my final treatment on January 26, 2009 [the day before my 46 birthday!!]

This is going to be a long six weeks leading up to a long nine months. Like everything else we have faced over the past three years, nothing moves fast. The first week of June I’ll have a port surgically implanted and will also have follow-up CT and bone scans. Yippee, more radioactive fluid!!!

The anticipated side effects are somewhat standard for chemotherapy; hair loss, neuropathy, loss of appetite, weight gain (from the steroids), fatigue 4-5 days after treatment, nausea and a few more.
None of this concerns me if the outcome is positive. I have my faith, your love, and the hope God instilled in us all. I truly believe we can win this battle before moving on to the next stage.

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The next update is in regards to the FLHW Disc Golf Tournament. On the upper left side of this page you will find a picture slide show like the one that I created for the Fall ’07 golf tournament. The day was fantastic and thanks to everyone, we were able to raise approximately $2,200 dollars for advanced prostate cancer research.

I especially owe thanks to my friend Gary who crafted this idea and acted as Tournament Director. I also would be remiss if I left out the FLHW Board and my dear friend Pete for his on-going support of FLHW.

At this point, our focus turns to our 4th Annual Golf Tournament to be held Friday, September 26th at Ironhorse Golf Course. We still have a few details to work out. The formal announcement will be coming out in the next week or so…..

Another Successful FLHW Event

Charity Disc Golf, disc golf, FLHW, Kansas City Disc Golf, kcfdc.org, PCF, Prostate Cancer Foundation -

Yesterday we held the first annual FLHW Disc Golf Tournament.
Pictured on the left are the winners, Dave and Arturo who shot 38 in the first round and 39 in the second for a total score of -31!

The picture on the right is of Arturo’s winning putt during the closest to the pin contest.
Click on it and in the enlarged version you can see the disc about to land in the chains.

The day started out blustery and in the mid 40’s, but by the afternoon round we were in short sleeves and the temperatures climbed well into the 60’s.

26 teams participated and helped us raise approximately $2,000 for the Prostate Cancer Foundation.

Again, the kindness of strangers as well as friends and family leaves me somewhat speechless. I owe a big thank you to Pete, Gary, the FLHW Board, the volunteers and everyone who participated in the event.

Do I belong here?

Advanced Prostate Cancer, disc golf, FLHW, florida, PCa -

It’s been a while since I got a little philosophical. I was thinking the other night, as I was going through the posts of a few of the prostate cancer bulletin boards, “Do I belong here?” I mean, how do I end up here? Then today I looked back through my blog and came across this from April 2005:


The words in that particular blog do not convey my mental attitude at this time. I am such a different person three years later. A lot has evolved with my condition since then. We try hard not to worry, however, as the monthly doctor appointments approach it becomes increasingly difficult. Our next one is scheduled for April 21st.

Florida and Spring Break seem like a lifetime ago, I want to go back and smell the salty sea air, watch the sun set over the ocean and walk in the surf with Mary.

A week from tomorrow is the first annual FLHW Disc Golf Tournament. Details are here. We are probably going to have a few discs left. If so, I’ll post the information here, so if you’d like to purchase one, please do – the money goes to a great cause!
Winter won’t leave us in Kansas City. Forty-two degrees and possible flurries tomorrow morning. We tee off at 7:30! We can’t let a little slow stop us now can we!!!!

Golf Times Two

Advanced Prostate Cancer, ball golf, disc golf, PCa, rainy days -

I love rainy days. Perhaps because I am trying to enjoy every day for what it is; another day!
A cliche’ yes, but one worth posting.



I welcome a rainy day like today. We need the rain, it’s Springtime. Selfishly speaking, I fertilized the lawn on Tuesday and today’s slow steady drizzle is a perfect compliment! Yes, too many rainy days in a row and I would have a much different tone, but not today.

Health wise, I have nothing new to report. I find myself in that ‘funk’ between appointments. Waiting, wondering what will happen on the 21st. Aches and pains have subsided.

I’ve been playing nine holes of golf each Wednesday afternoon (the ball variety), and walking the course. It’s great to get out, and my game is OK for this early in the season. Yesterday, I shot a 48 including a 10 on a par 5 hole. (I had a little issue with a creek and out of bounds!) If I could have just made that hole a double bogey 7 and I would have shot 45! Oh well, I’m just out there to have fun and improve my game a little this summer, no worries!

Spring continues to tease us here in Kansas City. The forecast is calling for mid to high sixties this weekend…..Saturday morning disc golf is going to be fantastic!

….reaching back into the bag of tricks!

Advanced Prostate Cancer, Casodex, disc golf, HDK, Ketokonizol, Lupron, Nilandron, PCa, thunder snow -

Happy Anniversary, my blog was three years old yesterday!!!

Friday we met with the oncologist at KU Cancer Center. For those of you in Kansas City that have been in the former Sprint headquarters building on Shawnee Mission Parkway, you would never recognize it, the place is beautiful. They did a wonderful job of renovating the building. As for the service, the disposition of the support staff was consistently warm and friendly. It was quite a refreshing experience, given the situation. The icing on the cake, while sitting in the waiting room, a volunteer pushing a serving cart approached each person and offered refreshments water, soda or juice. Additionally, she offered light conversation and a smile. They get an “A” for service!

Our appointment with Dr. V lasted well over an hour. He was again very patient and sincere. We reviewed my statistics, medications, etc., as well as the health charts Mary and I maintain. We also reviewed a matrix that Mary created that lists potential treatments, based on the research that we have done. Dr. V told us that we captured the current options and took the time to discuss the plus and delta for each option. Before I discuss what’s next, I probably need to provide some history. I’ll leave out some of the details in order to keep this slightly shorter than War and Peace!

Feb 2005: I started Lupron and Casodex. Lupron is a shot, it shuts down the production of testosterone by the testicles. Casodex is an antiantrogen and shuts down the testosterone produced by the adrenal glands. This is the “standard” treatment for advanced prostate cancer, to which I had immediate, although short lived results.

November 2005: I stopped Casodex. In some cases this can lower PSA. In mine, it lasted a few months.

September 2006: With my PSA rising into the 80’s, I started High Dose Ketoconizal with Hydrocortizone (another antiandrogen). Though I reacted well, my PSA never fell below 16. Also, because I was not in pain, we stayed on this regimen through December 2007, when my PSA rose to 30.

Now: my PSA is at 36. There is no standard ‘next step’, there is a lot of grey. Below are the primary options that make up the grey:
– DES: this was the standard treatment years ago. It is still used in cases like mine. DES comes in a pill form that is taken once a day. The issue is it is Estrogen. With that comes breast enlargement. In order to compact the breast issue, patients are given a single round of radiation across the breast bone. [please keep your comments about the ‘man-zere’ and ‘bro’ to yourselves] It also caused some cardiovascular concerns, so it is typically taken with a blood thinner.

– Chemo: the FDA approved chemo treatment for Prostate Cancer is Taxotere with Prednisone. The drug is administered interveneously once every three weeks for 8-10 treatments (depending on tolerance and reactions).

– Then there are a number of alternative treatments. I hesitate to use the word ‘alternative’. This is not witch doctors using ‘goat horn and frog tongue’. This is expert medical doctors specializing in Prostate Cancer that primarily use approved drugs in an ‘off label’ manner.

> Where we ended up. Being that I am not on an antiandrogen at this time, Dr. V recommended I try one more variation of antiandrogen. Starting today I will begin taking Nilandron. Nilandron is similar to Casodex. The anticipated side effects are minimal. We’ll give this 4 weeks +/- to see if I respond. If not, then we will search once again through the grey and decide what the next course of treatment will be.
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On an unrelated topic; have you ever experienced ‘thunder snow’? Yesterday morning we were playing disc golf. Around 9:00 AM we started hearing thunder. Next thing we know the sky is filled with lightening and it begins to produce freezing rain. As we hurriedly made our way back to our cars, the precipitation changed to the consistency of Styrofoam. It was crazy, I guess you had to be there…….