Faith-Love-Hope-WIn

Lucky number 7

Advanced Prostate Cancer, charity, David Emerson, Faith-Love-Hope-WIn -

On Friday, September the 30th, we held the seventh annual FLHW Charity Golf Tournament. As with the six previous years the weather was perfect for the event!

The day included reunions with old friends.

It included the sharing of valuable information on Prostate Cancer screening and the need to live a more active and healthier lifestyle.

Though a few friends could not make it, we were honored with their support for the cause of better treatments and additional research for a cure. 

 We took the time to celebrate friendships…..

… and to spend time with friends and family.


In the end, one team came was victorious, but all of us involved as well as the cause were all winners on this day!!

The rebound

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

Since the last post a lot of things have happened, all of them good.

First of all, I’m feeling much better mentally and physically.
The occasional left hip/femur pain has been gone for days. I’ve been able to avoid Advil for weeks
and mentally I’m back on my game.

I spent six hours yesterday painting and redecorating one of our guest bedrooms. Today we got up and walked four miles in the 23rd annual ‘Trolley Run’. This year it benefited a wonderful organization that my 3 year old nephew utilizes, CCVI (Children’s Center for the Visually Impaired). There must have been 12,000 runners and walkers. It was amazing and felt really good to walk on such a beautiful morning!

After words I came home, spent about an hour in the yard and then put the finishing touches on the guest room.Tonight Brad and I attended a Confirmation meeting at church and now the family is relaxing watching a little television.

So the secret? Just stay incredibly busy! Mary asks me to slow down all the time, but I can’t. I won’t if this is the end result.

Worries come creaping back

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

It never ceases to amaze me how fast the days are flying by! Is it really the middle of April already? Wow.

Before I get to me, there are a few guys out there I have been thinking about a lot today and add to my worries. I pray for a long list of fellow PCa survivors regularly, but there are two that are on my mind today.

Dan Z celebrated his one year anniversary. My guess is, like the rest of us, it’s rather subdued. I hope he does nothing more than spend the time with his family. After all, does anything else really matter?

There is another young man, and when I say young, Gabe is only in his mid-thirties. Today he found out his PSA jumped considerably. He was first diagnosed last summer and was hoping to manage his case for as long as possible. Now it appears he might have to make a treatment decision sooner versus later.

Then there is me. Lately I find myself waiting, worrying, wondering if the clinical trial drug is ever going to work? If not, then what? Worry, it’s beating me down, but I’m not out.

A short post I know, but this is where I’m at.

Flight 922

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -
Tomorrow is what I am hoping will be, my second to last trip to Atlanta. As I’ve written here before, I have the trip down like clockwork, however it’s getting old. To get right to my point, I really hope KU Cancer Center gets their approval for the trial in the next few weeks. If they do get approved, I can stop making these trips and the timing will make the transition smooth and easy.
Spring is in full bloom in Atlanta and I hope I can find a few minutes to enjoy it tomorrow. 
The challenge will be to dedicate the free time to two work conference calls right after my doctor appointment, so the down time will be quite limited on this trip. Ultimately, it will make the waiting time pass quickly.
The last two weeks went by so fast, they are a blur. Nothing eventful happened and almost the entire time was pain free. My streak of three weeks without Advil ended yesterday. I think between yard work on Saturday, the amount of walking over the weekend and the fact I worked out Monday morning,  I might have over done things just a bit. On the proverbial doctor’s scale of pain (1-10, 10 being the worst), this is a 2.5 tops. The good news is it only bothers me when I walk and it’s just something I live with from time to time.
With the arrival of Spring I have a lot of plans for our yard and gardens. I’m just praying the body cooperates! I’ll just have to pace myself, something I struggle with all the time.

The numbers can drive you crazy

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -
The PSA (Prostate Specific Antigen), the primary marker used to diagnose, track and manage a patient with prostate cancer is at best a confusing indicator. There are men dealing with advanced PCa that have low PSA and high levels of pain. There are men like me that have high PSA and little to no pain. Then there are cases everywhere and in between.
Another idiosyncrasy regarding the PSA test is the differences in labs. Since I started this journey I have always been advised to stick to one lab, due to the variances in the processing between labs.  My current state is a perfect example. In January I began traveling to Atlanta as part of a clinical trial for a promising drug called Abiraterone. To date I have had three PSA tests in Atlanta and each time I have had a PSA five days later as part of my routine, monthly Oncologist visit in Kansas City.  The differences in the tests are reflected in the table below:
Date:     KC                         Atlanta:
1/27      349                         200
2/24      356                         250
3/24      403                         293
As you can see, not only does the overall number vary greatly, the percentage of change is completely different. As a patient this can drive you crazy, believe me! Mary is particularly frustrated with the lack of explanation and frankly, concern with respect to the variance in test results between the locations. However, we have repeatedly questioned it and been reassured by both doctors that it is standard practice to have a variance, sometimes even significant variance between labs. At this point in time, we don’t have much choice but to accept it. Looking only at Atlanta the encouraging aspect is the trend line is slowing. January to February my PSA increased by 25% month over month. February to March my PSA increased 17%.  Looking at my KC PSA scores the January to February, the increase was only 2%. February to March my PSA went up 13%.
What does all this mean? Where does it lead? No where really. Since entering the clinical trial back in January we agreed that aside from a crazy increase (perhaps doubling) in either my PSA or excessive symptoms (pain), we would give it six months as recommended by Dr. A. With the trend slowing and pain mostly non-existent we stay the course for at least another month and God willing much, much longer. Patience is a virtue.  We are just anxious to see the PSA decrease to signal to us that we are finally successfully managing the cancer.

Serenity

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

It’s not quite 7am, March 24th, 2011
I am writing this while in the air between KC and Atlanta as I make my fifth trip to see the Oncologist running the prostate cancer clinical trial in which I am participating.

I currently find my mind wandering to a place I’ve been successful in avoiding since I was diagnosed six years ago. The place I refer to is of course ‘worry’. I worry when and if this current treatment will begin working. Time will tell and by late Friday or Monday morning I’ll have the answer I both seek and fear.

This rant is the part I suspect is the hardest for people to understand. Perhaps I’m to blame for not spending enough time on it here. To me worry is whining. That is likely not a very good attitude to take, but I question if there is another better attitude to fight this fight with? My emotions are all over the place as you can probably tell.

I have options beyond this current medication but they are not the greatest. Two involve a return to chemo. One of the chemo options, though recently approved for use in cases like mine, is once again not a cure. There are several drugs in an earlier trial stage then my current treatment, but those become a matter of logistics since none are available in Kansas City.

Beyond the selfish worries my thoughts turn to my family, instigating additional worries. My son, being fourteen, is at a critical stage in his life. He’s about to start high school and with that his world, challenges, experiences and such are set to grow exponentially. I want to be there as he matures through his high school years. Then there is Mary. Twenty-four years ago she came into my life. She is everything to me, my best friend, my confidant my heart and my soul.

We’ve known for six years that our dreams of a lifetime together, of spending our retirement years together were in serious jeopardy. There are times like these when it really doesn’t matter that we may have discussed the changes to our grand plan, worry, pain, and mental anguish are at the forefront of my mind today. I’m hesitant to even type the words ‘I want it all to go away’ simply because those words ring of denial. It is what it is. I have stage IV prostate cancer, I’m struggling through a temporary funk, but I’ll come out on the other side alive, mentally stronger and a better person for having gone through this experience.

A very good friend, Dr. S. and I discussed the power of the ‘Serenity Prayer’ once, the discussion is quite clear to me, like it was yesterday. As I write this from 33,000 feet I had to pull the prayer card that Mary had gotten me from my wallet and recite it three times. It gives me comfort right now and I would like to share it with you…

God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.
Living one day at a time,
enjoying one moment at at time,
accepting hardship as a pathway to peace.
Taking, as He did,
this sinful world as it is,
not as I would have it,
trusting that He will make things right
if I surrender to His will.
That I may be reasonably happy in this life,
and supremely happy with Him,
forever in the next.

Five thousand reasons to say thank you!

Charity Disc Golf, David Emerson, Faith-Love-Hope-WIn, Johnny's Tavern, llywelens pub, tallgrass brewery -

The events of this past weekend were absolutely exhausting! I wouldn’t however have it any other way based on the outcome!

We raised over $5,000 for advanced prostate cancer research!

On Friday night we held our second annual Friday Night in the Greenhouse event. It was a great time and not only did I run into some old friends, I met a few new ones as well. Words cannot express how grateful I am to the people at Suburban Lawn and Garden and specifically to the Stuecks. You are unbelievably generous with both your time and resources.

Saturday was our third annual Prostate Cancer Doubles Shootout, disc golf tournament. The event has grown each year and in 2010 we continued the trend. 42 teams registered for this years event. We had sponsorship from a regional micro-brewery, and the weather was perfection and the FLHW Board came through with another great lunch!

My day began at about 6:00am and I was out the door by 6:45 in order to get things started. I was well rested and still reeling in the events of the day before; the greenhouse and the fact I got another hole in one… details and an update to follow. It was a chilly 41 degrees as the golfers began to arrive, but as the crowd increased, so did the temperatures. We were able to get the first round started about twenty minutes late, but we had built a little flexibility into the schedule.

I was partnered with my friend and the co-tournament director Gary and we played with a few other friends. Our round started out normal; Par-Birdie-Par and as we approached the short forth hole we were greeted by the owner of the course and fellow FLHW board member Mark. These two, along with the five others I was playing with began to lightly jab at me regarding my hole-in-one on this very hole the day before. Cries of “Come on hot shot, let’s see it again” were never ending as I walked to the tee box. I grabbed the same disc, and let go what immediately felt like the exact same throw. The result?

Another ace! Same disc, same hole, two days in a row!!

This is my disc sitting in the basket on Friday

As I’ve shared with others, I was mobbed! I’ve never been high-fived, back slapped or hugged so much in my life! It was unbelievable!

It was a personal highlight for the day but the success of the event overall was even better! Once again I met many new people and hopefuly convinced a few to get tested for PCa. We raised a lot of money for the cause and enjoyed some awesome disc golf on a beautiful, private course.

I would be remiss if I did not close with thank you to the following:
Pete
Gary
The FLHW Board; Rich, Mark, Steve, Chris
Mary
Katie
Cathy
Kathy
Bill and Bo
All the players
Tallgrass Brewery
Innova
Gorilla Boy Bags
Avery Jenkins
Johnny’s Tavern
Llywelyn’s Pub
and all the others sponsors

2009, you were good to us!

Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, FLHW, Prostate Cancer Foundation -

2009, where have you gone?

It seems like just a few weeks ago we were wrapping up 2008.

Today we closed the year for the Faith, Love, Hope, Win Foundation by making our annual donation to the Prostate Cancer Foundation. I am proud to announce that for 2009 our donation is the same as 2008, $32,000!

To raise that much money, in the midst of this economy makes me so proud of all that have helped throughout the year. Two poker events, a disc golf tournament, the greenhouse event and of course the golf tournament.

I’m a little speechless right now. In just four and a half years FLHW has raised over $132,000!!

We couldn’t have done any of it without the help of all the players, sponsors, friends and family.

God bless you all.

A long journey, that has just begun.

Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, FLHW, Suburban Lawn and Garden -

Tonight our foundation, Faith – Love – Hope – Win (flhw.org) is having our first in what I hope turns into an annual event. A very, very generous man has offered to donate 10 percent of the total sales (between 5 and 8 pm) at his greenhouse to our foundation. The details are within this flyer.

This however is not the point of today’s blog. As I was coming into work today I was thinking about tonight and what Bill is doing for us and other non-profit groups here in Kansas City. I was also thinking about all the other people that are helping and have helped over the years. There are the smaller signs of support and large ones and the difference is not necessarily monetary. Sometimes it’s the little things that touch me, like the simple beauty of that flyer. The two guys that helped us to design it were were so generous to offer their time and talent. One I barely know, the other I have never met, I don’t even know his name.
I guess my points are these; not only am I deeply touched by their kindness and support but I am also rather proud that this little effort Mary and I began four years ago, is starting to gain some serious momentum. True, we’ll never be Livestrong or Komen but that is not our goal or our purpose. It would be ideal for the Prostate cancer community if there was a single, national, powerful group, but that might be someone else’s battle. FLHW has come a long way in four short years, $100,000 raised is nothing to sneeze at! 2009 however, in the midst of this economy, is going to be our best year yet!
I am wandering in my thoughts a bit today but it is my blog and sometimes I do that. I’d like to once again say thank you to our Board, all the volunteers, sponsors, players, donors and attendees that have helped make each of our events successful.
At times the world can be harsh and cruel and hard to live in. At other times the genrousity and kindness of strangers that reminds me that God put me here to help others and do my best to live a selfless life. For me, it’s too bad it took so many years and Prostate Cancer for that to really sink in.

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.