October 30, 2011

Condition and recognition

I have spent most evenings over the past week trying to get the timing of Advil and Percocet down to a science. I haven't earned a masters degree yet. Some days and nights have been fine, with very little to no daytime pain and decent enough sleep. There have been days of heavy fatigue and nights of tossing and turning and what amounts to maybe 3-4 hours of good sleep. Sleep on these nights comes in fits and starts which in turn leads to fatigue the following day.

My return trip to Boston can not come soon enough! I will be back for my next appointment in Boston on Tuesday. We anticipate the doctor will  request my dosage be increased and we are hopeful that the new dose will offer me relief from the pain and attack those tumors in my bones that are causing me discomfort.

On another note, you may remember this story from earlier this summer.

I received word earlier this week that the writer, Kimberly Winter Stern, has been recognized for the article. The High Plains Division of the American Cancer Society recognized her for excellence in journalism. 

Here is the link, scroll down to the 'Magazine' catagory:

Kimberly, I think I can speak for John when I say thank you for capturing the story in such a perfect way and for sharing in our passion for finding a cure for prostate cancer.

October 21, 2011

The short version

Last week while in Boston I had updated bone and CT scans. Both were standard protocol for the trial. The results from the pharmaceutical company conducting the trial will be available when I return in early November. The official reading from the scans will determine if the dosage I am currently taking is effective, or if it needs to be increased.

The preliminary reading indicated that overall, the foci are slightly less intense and confluent than on prior imaging; this improvement is especially prominent in the ribs and spine. One's first reaction might be that a celebration would be in order. However, there are two reasons that we are not yet in a celebratory state at the Emerson's.  The first being, the results will have to indicate that the ‘improvement’ needs to be 30% or greater in order to continue at the current dosage. Increasing the dosage is not a bad thing, but it will come with the risk of more side effects. (Currently, I have not experienced any side effects from the treatment, except for increased fatigue, which may or may not be directly related to the medication.) The second reason being that I am not feeling any better. There are good days and OK days. AThe ratio of good to OK favors OK. I’m still not experiencing ‘bad’ days. Three Advil every six to eight hours combined with two Percocet when I go to bed and occassionaly 1 Percocet in the morning and/or during the afternoon and I get through each day.

For now, I march on as always. I have approximately ten days before I return to Boston and I plan to fill those days with a lot of living!

October 17, 2011

Friends doing their part

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! 

October 15, 2011

When being a little sad is cleansing

On a recent trip, a few songs came on my iPod that made me sad. However, because I love to listen to each of them for a unique reason, I let them play. I guess maybe sad isn't the right word...perhaps melancholy is a more appropriate description.

As with most music I listen to, I just listen, I don't memorize lyrics or go read what they mean. It is usually the music and feelings they evoke that gets to me. So here is a list for you to review, or comment on if you desire and maybe go buy the song yourself if you choose.
- James Morrison: The Pieces Don't Fit Anymore
- Oasis: Sunday Morning Call
- Lifehouse: Breathing
- Foo Fighters: Times Like These
- Finger Eleven: One Thing
- Train: Drops of Jupiter

These six are just a few that rotated through this particular flight, there are many more. Each of these, for it's own particular reason, conjures up emotions. There are times when these emotions manifest into sadness and perhaps tears. To me this is perfectly acceptable because amongst other things, having cancer has taught me to accept and embrace my emotions. God tests us on a daily basis and in a number of ways and these songs help me become more energized to fight on.

October 12, 2011

Lucky number 7

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!!

October 10, 2011

From the far corners

As I leave for my six week check up in Boston I can feel the strength of so many of my friends and family. I also feel the support from a distance. Recently I have received quite a few emails and blog comments from locations far, far away.

Previously I wrote about a young man from Uruguay who wrote me just days after his father passed. His kind words touched me very deeply and emotionally.

I have also quoted Ivan from Australia. He has become like an old pen pal, back before computers and email. I so look forward to his emails. His prose is beautiful, encouraging and truely from the heart.

Then there was a note from Naples, Italy. Raffaele, only 24 years old, who wrote to say how much enjoyment he and his family found in my blog. I was once again dumbfounded at the reach of this journal.

Most recently I exchanged messages with Melvyn from England. His words helped in ways I cannot express.
"I think it is harder for our loved ones and don't know how my wife copes. You have your disc golf and I have my horse - I do my thinking and a lot of praying whilst riding the quiet English countryside and thank the Lord for the blessings He has given me in life so far."
What a beautiful picture he painted for me as I anticipate the results of blood work and bone scans, to be riding a horse through the English countryside!

October 08, 2011

Prostate Cancer Awareness Part II

While I was at the television studio last week, Curtis Jay of KSHB-41 asked if he could interview me for his weekly 'Faces of the Community' segment. Below is the piece that ran at various times from Thursday through Sunday. Thanks Curtis and KSHB-41 for helping raising Prostate Cancer awareness in our community.

October 05, 2011

Prostate Cancer Awareness Part 1

Last Wednesday I had the privilege of being interviewed by JiaoJiao Shen of KSHB-41 here in Kansas City. She did a great job and as you will see in the video, she did her research before the interview. Many thanks to JiaoJiao and Channel 41 for raising Prostate Cancer awareness.

Interview on 9-28-11 Midday News