FLHW

Pretty close to normal

Advanced Prostate Cancer, Cabozantinib, David Emerson, FLHW, XL 184 -

For all the issues I’ve been having lately, today, for more than a few hours, normalcy returned to our lives.

It started early this morning when I decided I would hit the disc golf course. No, not to play, just to walk along and visit with some of the guys. It only got better when Mary, for the first time ever, decided to join me. The crowd was light but it was already over forty degrees when we got to the park. I was only able to last until the 11th hole for two reasons; first I didn’t want to overdue it and two, the easiest way out of the woods is after the 11th hole.

We went home, I had a quick 30 minute nap and then it was time to get ready for the matinee show for Trans Siberian Orchestra. Brad, Mary and I had a great time,but it was not at all what we expected. I was expecting something more along the lines of Mannhiem Steamroller, this was more of a rock opera performance, with some seasonal music added in occasionally. The lights and special effects component was very, very impressive.

After the performance, it was off to the Country Club Plaza and our favorite restaurant, Houston’s. When we walked in at 6:30pm there was already a ninety minute wait.! Being seasoned veterans at Houston’s, within five minutes we had seats at the bar and were placing our orders for dinner! The service we received was as good as having our own booth in the dining room.

What a perfect, busy, entertaining, and nearly normal day!

Friends doing their part

Advanced Prostate Cancer, FLHW, JRC Jewelry, PCF -

At this weekend’s Kansas City 1/2 marathon, this is what many of the runners saw… the race bib on Paige’s back! Paige contacted me early in the summer and said she was training for the race and wanted to raise money for FLHW. Initially she set a goal of $1,500 but by the time she finished, she actually raised nearly $2,100!

Paige, thank you for supporting our cause and contributing to the hope that we share through the research for a cure for advanced prostate cancer.  Words do not adequately express my gratitude!

Back in March I was contacted by a woman from Maryland. She explained that her brother as well as her husband were both battling prostate cancer. Mary also explained that she owns a jewelry store (http://www.jrcjewelry.com) and wanted to know if I would send her some of the blue FLHW bracelets in order for her to sell them to her customers.  Over the next few months she sold several hundred bracelets and raised a few hundred dollars. This was just the beginning!

Early in the summer she informed me that a supplier had donated a beautiful diamond and sapphire bracelet for her to raffle to facilitate further fundraising for our cause. After selling tickets through September, the picture to the left is her brother Richard drawing the winning ticket. When it was over, Mary and the customers of JRC Jewelry had raised $5,000 for FLHW!

Mary, Richard and everyone involved, all I can say is, you are all awesome! 

Focus, from another continent

Advanced Prostate Cancer, David Emerson, FLHW, XL 184 -

In my mind I have been contemplating several variations of this post for a few weeks. I received a note from a friend and in it this person referred to me as a hero. At first I wanted to grab a keyboard and proclaim “I am no hero”. For whatever reason, I just want to share, and hopefully benefit others with the my life experience. I don’t think I can carry the weight of that label. This clearly was not their intention, but those four letters stuck with me.

Life got the best of me this week and between work, doctors appointments and family activites I was not able to take the time to sit down and address this topic. Good thing because today I received a wonderful note that put it all in focus. DG, a young man from Uruguay sent me the note below. I have included it here with his permission.


Dear David, I followed your site and fb for a couple of years because my dad have pc.
2 days ago he lost his fight, six wonderful years fighting shoulder with shoulder with a exceptional father.

I write this mail to say how much helped us yours histories, your knowledge and your courage.
Maybe i dont wrote you before because my english (with the years is making worst and worst) but I still keeping reading your post every day, sharing your happiness and sadness, and this was keeping me pushing and pushing until the end.
 
I had the lucky and pride of keep my dad in my arms during her last travel with mom,my brother,my wife and my little daughter (Her princess ) in our home.
Now is time to rest for dad and for us.
Please keep fighting, i will keep reading

I cried, seriously. Perhaps it’s the rainy morning. Maybe it is recent news about PCa brethren facing tougher times ahead. Maybe it was the wonderful, complete day I had with Mary and Brad yesterday. What ever it was, his words touched me in a way I definitely needed at this time.

I also sit here and wonder why, two days after he lost his father, DG would write to me. Why? Maybe becasue this blog is more far-reaching and meaningful than I sometimes give it credit for. I am honored to use this medium to reach out to those touched by cancer. I’m just a guy with Prostate Cancer that, at the beginning of my journey, decided to share my battle with cancer publicly. If doing so reaches nearly all four corners of the world and I can bring just a little bit of peace to one man, one family, then we all are blessed.

DG, you and your family will continue to be in my thoughts and prayers.
I dedicate the following prayer to your Father:

Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen. 

For Jimmy R

Advanced Prostate Cancer, David Emerson, FLHW, PSA, The Starfish Story -

Earlier this year, probably in the March timeframe, I received a request for several of our FLHW silicon bracelets. Through a series of emails I discovered I was sending these to the sister of a man my age, also battling advanced prostate cancer.

Last week I received an email update from her that Jimmy had passed. There are many reasons this news upsets me, but the part that hurts me the most is the fact that he left a wife and three teenage children.

Are you starting to hate this disease as much as I do?

Jimmy’s sister told me that as an educator he was known to provide students a “Golden Starfish” pin. She sent one to me and below is the poem that accompanies each pin.
____________________________________________

The Starfish Story
While walking along a beach, an elderly gentleman saw someone in the distance leaning down, picking something up and throwing it back into the ocean.

As he got closer, he noticed that the figure was that of a young man, picking up starfish one by one and tossing each one gently back into the water.

The old man smiled, and said, “I must ask, then, why are you throwing starfish into the ocean?”

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the elderly observer commented, “But young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

The young man listened politely. Then he bent down, picked up another starfish, threw it back into the ocean past the breaking waves and said, “It made a difference for that one.”
____________________________________________

Bless you Kathy and Jimmy’s entire extended family.

2011 Prostate Cancer Doubles Shootout

Advanced Prostate Cancer, Charity Disc Golf, David Emerson, FLHW -
Last Saturday 87 disc golfers competed in the 4th Annual FLHW ‘Prostate Cancer Doubles Shootout’. I would like to thank our Board members and volunteers who did a wonderful of job putting this event together.  The spirit of this event is always inspiring!!!

There were 5 teams from St. Louis, two from Marshall, MO, one each from Topeka and Wichita, KS as well as one from Lincoln, NE.  The rest of the players were from Kansas City and surrounding areas. Though the weather was chilly with an overcast sky the winds died down for round two and the afternoon was quite enjoyable!

Lunch as always included our infamous salmon burgers, and much more. We were entertained by a champion Frisbee dog, Towser and the players finished the break with a Ring of Fire filled with tons of prizes!
Due to my love for the sport, this might be my favorite event of the year. It also ranks up there because of the underling purpose of the event. Yes, it is great to raise some money for the cause, but more importantly, I appreciate the opportunity to address a group of men and women that are at or near the optimal age for starting to be concerned about Prostate Cancer and improving their health in general. At the end of the day, if one person gets tested or begins having conversations with their doctor about their health, then it’s mission accomplished!

An absence

Advanced Prostate Cancer, David Emerson, FLHW, PSA -
It’s been a few days since my last post. Sorry, but I’ve been extremely busy! In addition, there is not a lot to report from a health perspective. I continue to feel fine and in fact, perhaps even a little better overall.

Earlier this week Brad had his Confirmation. It was a touching, spiritual Mass and it was good to have family there as well. We had a nice celebration over the weekend. I cannot express enough how proud I am to be his father. How he has handled my condition for the past six years as well as how he has managed other situations make me proud beyond words. He has developed emotional strength and maturity well beyond his years.  He and I will be spending a lot of time together in the next several weeks, and for that I am both thankful and blessed.

Last Friday we held the 3rd annual ‘Friday Night in the Greenhouse’ event. It was beautiful evening and we were delighted to see a number of old friends and many returning supporters of FLHW. It is a nice family event and we raised $1,800 for prostate cancer research and promoted the importance for men to be tested for prostate cancer!

Tomorrow is the 4th annual FLHW Prostate Cancer Doubles Shootout, a two man disc golf tournament. This year will be the biggest, with more players and more prizes than ever before! Once again the weather forecasts for it to be a little cool, but dry.  It was that way last year and turned out to be quite perfect. Looking forward to spending the day outdoors with friends and family. I’ll post plenty of photos and perhaps some video in the days ahead.

Have a great week-end!

Letting it all sink in…

Abiraterone, Advanced Prostate Cancer, David Emerson, FLHW -

After allowing a few days to let the events of last week sink in, I find myself at peace in so many ways. Although I was very nervous about addressing the J&J team, the speech itself was extremely well received. I was grateful that they appreciated my humor and I was able to keep my emotions under control, for the most part. I can talk about my plight and the disease in casual conversation with ease. For this event I had prepared a dozen Power Point slides and 14 pages of speaker notes. I did this on purpose to keep my myself on point, as I tend to wonder in conversation, especially after being on Lupron for six years. I had a number of points that I really wanted to share and the notes were there to keep me on track.

After I concluded my presentation, I was approached by one particular woman that was so emotional she had written her comments on the back of her business card. We ended up talking and I learned that her father had recently passed from advanced PCA. She described it as him just giving up. The conversation was both touching and crushing.

Many of the attendees followed up with personal emails and comments here on my blog. One email in particular says so much:
Power of the mind, empowering the body with the support of loved ones to fight cancer is so much more powerful than people realize and you brought those ideals to so many people including myself. You changed the way I think and live my life – Thank you David! You are an inspiration now to so many. 
I think I have found a calling. If not a calling, certainly my passion. Promoting my journey,and the fight that so many men are going through, is what I am meant to do. If it helps the life of even just one man, it is all very well worth it!

In so many ways

Advanced Prostate Cancer, David Emerson, FLHW, PSA -

Saturday night, in the midst of the annual dinner/auction at our church, I received recognizition for supporting  the auction committee and for the accomplishments of FLHW.

This came as a complete and total surprise to me. As our Church Administrator, FLHW Board member and dear friend read those gracious and kind words, I was numb. It was the exact opposite of how I felt last week in Philadelphia. Thank goodness I wasn’t asked to speak, this was different. This was a room filled with family and friends, and I would have wept like a toddler. Chris, Rob, Beth and whoever else was involved, thank you from the bottom of my heart.

Later on in the evening a fellow parishioner approached me to both congratulate me and offer a vey generous donation to FLHW. Wow, pile on my weaken emotional state! Once again, I have to say I am amazed by the kindness of people.

————

Tomorrow is my next bi-weekly trip to Atlanta. I’m still feeling good and though my numbers were up after the first month of Abiraterone, I am confident in the doctor’s prediction that it can take several months for the drug to take effect.

The Big Speech

Abiraterone, Advanced Prostate Cancer, David Emerson, FLHW, metastatic, PSA -
Today I had the honor and privilege of visiting with over three hundred members of the Johnson and  Johnson pharmaceutical team. For about 30 minutes I shared my personal story and some highlights of the challenges, concerns and opportunities of the many men fighting the battle against advanced prostate cancer.
I was more nervous than the previous times that I have discussed this topic publicly, either on local television or the radio. A large room full of people can be intimidating. 

Below is an excerpt of my introduction to my message about living with advanced prostate cancer.

~~~~~~~~~~~~~~~~
I really appreciate you providing me the time to tell my story and the personal side of what it’s like living with advanced prostate cancer.
Though I will spend this time talking about my journey, at the same time I do so as a representative for all the other men out there fighting this disease. These names (referring to a slide projected on 2 large screens at the front of the room) are just 27 of the hundreds of thousands of men out there fighting this battle every day. Some of the men listed are in remission, others are in a similar situation as me, and still others are struggling more than we know. They all have stories, but just like the disease itself, and humans by nature, every one of their situations is unique.
Art G   Bob E   Brian W   Bruce L   Chuck M   Dan J   Dan Z Dom M   Don T   Eric S   Greg J
Jay D   Joel N   John A   John H John S    Kiwi Brian Ludwick   Mark H   Merle   Mike M
Scott G   Terrance   Terry H   Tom T   Tony C   Walt W
I am not a doctor, an academic, nor an expert, but I do believe I know a little more than the average patient. The primary lesson I have learned during this journey is that prostate cancer is a really, really complex disease and every single patient is different. There are men with low PSA and just a few small tumors that are in such excruciating pain that they can barley function. Then there are men like me with high PSA, extensive mets and are in no pain. It’s crazy at best.
Rik M   Rick S   Aubrey P   Steve B   Wes W
And these 5 are friends of mine that are no longer with us. One of these men fought for over 13 years, another less than two. I share these 5 names only to express that once again I am honored to represent those that have succumb and all the men out there dealing with the advanced stage of this disease.
~~~~~~~~~~~~~~~~
I continued by sharing all aspects of my personal journey; the spiritual, the nutrition and physical, the emotional and the medical.  I discussed the blog, our foundation and the fact that people from around the globe have reached out to us, recognizing that prostate cancer has no borders.

I attempted to lighten the subject with a bit of humor.It seemed to be well received.  My hope is that my audience left with a broader perspective of what we, the men with advanced PCa, go through as we battle this horrible disease.

Trailblazing….

Abiraterone, Advanced Prostate Cancer, Atlanta, David Emerson, David Emerson pca, FLHW -
It was just a brief comment during a phone call. The friend, and fellow PCa patient, said something to the effect of  “You are out there trailblazing for me and the rest of us!”
Trailblazing? Wow, I never looked at it that way. Perhaps I was living in a momentary bout of selfishness? I was looking at my current clinical trial from a me, me, me point of view. Yes, it is true I really need this treatment to work, but just as important, we, all of us fighting this disease, need it to work. 

This past week I have been dealing with a bit of back pain. It is manageable, but I do plan to discuss with Dr. A in Atlanta on Thursday and with Dr.V next Monday. It’s on my right side and feels like it is in the middle of one of my ribs. After doing some research on line this afternoon, I learned that back pain is one of the listed side effects for the clinical trial drub, so I am hopeful that is the source of the pain, versus a bone met.   Tylenol and Advil have been taking care of it and I have spent the last few nights sleeping on the heating pad, which has helped as well.


Tomorrow I will complete my second one-day round trip to Atlanta. When I printed my boarding pass for the departing flight this morning, the forecast said 61 and sunny in Atlanta. I just print the boarding pass for my return flight and the forecast says 41 and snow flurries in KC when I return! If my flight is oversold, I might just have to get off and stay the night. (Just kidding Mary!)