FLHW

Belated Milestones

Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, FLHW, golf tournament, milestones -

This completely slipped my mind as I wrote my last post.
I actually spent a lot of time on the airplane Monday thinking about this, but forgot to include anything….

August 18th, 2008

This date might not mean much to most people. To me it marked 42 months, or three and a half years post diagnosis. So much has changed, yet so much remains the same.

First and foremost, we, Mary and I have settled into a somewhat comfortable way of dealing with having cancer on a daily basis. I am not suggesting that it’s easy, I’m just saying that it does not feel like this all encompassing burden. We have learned to deal with it, and we continue to live our lives, and maintain as much ‘normalcy’ as possible.

Next, I have met so many fellow Prostate Cancer survivors, it’s incredible. From all over the US, from all over the world! I really cherish their friendships, advice and feedback. However, there are a number of good people that we have lost; Ric, Wes, Rick, Aubrey and more. This is the sad part, merely typing their names makes me cry. God bless them, God bless their families.

Finally I come to our foundation; Faith, Love, Hope, Win. As the planning for our fourth annual golf tournament continues, I stop and think about what we have done in such a short time, with such limited resources. By the time our tournament is completed on September 26th we are hopeful that will be able to have raised over $100,000 for advanced prostate cancer research. Wow!

If you feel like reminiscing with me, this is a link to all the references of the word ‘milestones‘ in my blog. Pretty interesting, at least it was to me.

I’ll finish with a list from my blog entry dated July 21, 2005:
So these are my milestones, these are the things I roll out of bed each morning and work for, these are the things I live for and fight for:
– We will celebrate our 15 year wedding anniversary (Aug 2006, no doubt! ~ at a minimum 25 in 2016!!!)
– I will celebrate my Grandmother’s 100th Birthday in November
– I will see my niece graduate from college (May 2008, for sure ~ as long as she doesn’t begin a 5 year plan, no pressure Meg’s!!)
– I will see my nephew graduate from high school (May 2009)
– I will see my son get his drivers license (September 2012)
– I will see my son graduate from high school (May 2014)
– I will live to see him graduate from college
– I will live to see him get married
– I will live to be a grandfather
– I will live to be cured………

The first two are completed. The third…looks like I’ll see her married before graduation, but that’s OK. No doubt about number four. As for the others, I still have a few years, but each is getting closer and certainly more attainable as the days fly by! The final one is what I fall asleep praying for each night.

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…..

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!!!!

Read ’em and Weep!

Advanced Prostate Cancer, FLHW, Jimmy V, prostate cancer, Prostate Cancer Foundation, Saint Michael, texas Hold 'em -

There are a number of reasons for the title of today’s blog. The last 24 hours have been, as I’ve described in the past, that part of my journey, my roller coaster ride, that I can reflect on and enjoy. I’m on an ‘up’!!

First and most importantly my PSA number this month: 21.9

I’m trying to type and pray at the same time! Thank You God for giving me good news as we approach Christmas. I was not sure how Mary and I would have dealt with bad news hanging over our heads during the holidays? Obviously, we would like the number to be much lower, but at least it is not doubling, tripling, etc. As Dr. H would say, the change is statistically insignificant, which equates to a stable condition. I am grateful that I continue to feel good and that we don’t have to worry about it this year!!

Number two, the ‘Jimmy V’ video is on ESPN right now.

Another reason is last night we held another Texas Hold ’em Poker event. We had a great time as you can see from the picture. Kyle (right) took home the first place prize, Bruce (far left) was second and my long time friend Steve took third. Due to the success of the event we will be making another $1,000 donation to the Prostate Cancer Foundation. It will be matched for a total of $2,000!! A large thank you goes out to everyone who played and contributed to the night’s success!

Finally, I add this note with a bit of trepidation, however I feel I need to include the information. There is a wonderful, very spiritual woman at our Church that is facing her own cancer battle right now. She will start chemo soon and I would like to ask you to say a prayer for her, as she fights this devil, cancer.

I saw her and briefly spoke with her Saturday after Mass. The emotion and the fear were painted across her face. Mary and I know that fear all too well. I tried to be encouraging, I could only tell her she was in my prayers. I hope that somehow, my words comforted her. Once again….it’s not about me. Damn this cancer!

So, as she continues her battle, I include and recite this prayer for her:

Prayer to Saint Michael:
Saint Michael the Archangel,
defend us in battle.
Be our defense against the wickedness and snares of the devil. May God rebuke him,
we humbly pray.
And you,
Prince of the heavenly host,
by the power of God,
thrust into Hell Satan
and the other evil spirits
who prowl the world for the ruin of souls.
Amen.
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Historical Numbers
Date – PSA
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 1.4
51/27/06 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 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 0.35
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 test:
2/?/05 219
12/?/04 189 (Original test)