The Big "C"

An interesting thing happened on the way.......

2012-01-31T15:43:00.000-06:00

Monday was my monthly oncologist appointment here in Kansas City. It went rather well, in fact I'd almost say it went great!

Dr. V provided new prescriptions to try to help with managing the side effects. The first is an appetite enhancer. I wish it had been prescribed for me initially when I started experiencing the nausea. The first dose seemed to help with dinner last night, I took the second dose before lunch today so should have an indication soon if it is consistently effective. Last night it really helped with nausea. I am hopeful that it will be the same today. The doctor is understandably concerned about my fatigue and weight loss due to the on-going nausea and intestinal issues. With not many treatment options, Mary and I are doing our best to stay positive and make informed decisions. The doctor is very compassionate and open to helping us choose the right path.

The other three scripts were for potassium (mine is low!), another type of medicine to try as an option to combat the nausea, and a refill on another drug I take to help me to sleep.

I also received an update on my PSA, the last three measures were:
Dec 5: 1,961
Jan 3: 1,317
Jan 30: 1,799

Those are rather wild swings and we are trying not to focus on the PSA, although it is rather difficult to ignore a number that high. We continue to try to focus on the good news from Boston last week after the bone and CT scans, with increased shrinkage in the tumors in my bones and the CT scan showing that the organs are still clear. We have very much to be thankful for!

The Cake Gets Bigger

2012-01-27T15:48:00.000-06:00

Today is my 49th birthday. Frankly, I wasn't sure I was going to make it, seriously.

The first birthday post I publishedin this blog was in 2006:
http://prostatecancerat42.blogspot.com/2006/01/were-going-to-need-bigger-cake.html

Although a number of names would need to be added to the acknowledgment portion, I likely could have re-posted the entry word for word this year and the message would have been then same.

It's a weekend of friends, family, relaxation and celebrating 49. It also marks the beginning of all the sorted milestones, initial diagnosis, first scans, official diagnosis and the beginning of living with this dreaded disease. I'll do my best to mark each of these with a post.

For now, HBD2ME!!

A beautiful day in Boston

2012-01-24T16:49:00.000-06:00

Yesterday, I flew up here to Boston in order to have updated CT and bone scans. Both procedures were uneventful, except once again, the CT fluid acted like a barium enema. I'll leave it at that. Needless to say, my afternoon in the hotel room pretty much sucked.
Last night it was pouring down rain, so I just went to an Italian restaurant connected to the hotel and picked up dinner to go. Between not being in my own bed and the residual effects of 150mg of Prednisone, I slept like a baby, with colic! The good news is my appointment was not until 1:00 PM, so I was able to sleep a little later this morning to make up for my lost sleep.

I ran into my friend Ralph from New Jersey. It was nice to see a familiar face and catch up with him. He is in the same trial, and currently on the same dose (75mg). He is also
experiencing the same side effects as me,: lack of appetite, nausea, diarrhea, etc.
We'll touch base later this week to compare the outcomes of both our appointments.

I went over everything in detail with Dr. S and he recommended we change to a lower dose (50mg). I told him I'd like to see the bone scan first. When we compared yesterday's scans to those taken in August, it was incredible to see the contrast and a relief to be able to see how much the tumors have gone down. Even comparing the scans to those just taken 9 weeks ago, there were very noticeable reductions. Some of the reporting from the pharmaceutical company lags behind but what they did have showed a 42% overall reduction from Aug thru the November scans. After yesterday's it might be 50%. After seeing these, we agreed to lower the dose to 50mg. The doctor was very certain all the side effects would lesson by doing so.

I return to Boston again in 6 weeks just for an appointment to meet with the doctor, and then 6 weeks later I will return for the same routine as this week to have updated scans.

There was snow on the ground when I arrived yesterday. Right now it's 55 degrees and
sunny! Somebody sang 'Life is good today', and I agree - it sure is.

Winter's got a hold on me

2012-01-18T19:20:00.001-06:00

As I mentioned in my last post, I had this big plan to blog a lot this year. I’ll eventually catch fire and start to post more, but for now, winter’s got a hold on me and I just don’t feel very creative or motivated. I can't complain about the weather that we have had so far this season, but it is still winter.

There are no real changes in my health. The fatigue is a little better. I have been in the office full time for seven straight days. The lack of appetite and diarrhea continue. The former is constant, the latter day to day.

I will share that I am reading the Steve Jobs biography. While I was always a fan and thought highly of him, this book has totally changed my opinion. To me, his management style and the way he treated people completely take away from his creative brilliance. I’m just half way through with the book, but cannot image there is some hidden gem in the latter half of the book that will change my perception of the man. Once again, his work and the products Apple created upon his return in the late 1990’s are unheralded, but at what cost to his family, friends and those that worked for him. This is just my opinion, you can decide on your own. The book is a thousand pages, and for the most part, a page turner.

Since we didn’t go to St. Louis over the holidays, we have been pleased to have family visit here in KC. Last weekend my brother Doug and his wife Michelle came in. We didn’t do much except watch some movies and football, but it was good to have the house full and spend time with them. The weekend coming up my other brother Dan, sister Barb and nephew Zach are coming. I look forward to that as well.

For now I will continue to trudge through winter. It has been extremely mild here in Kansas City and it looks like it might continue for the next several weeks. The next thing you know it will be spring, my favorite season of the year.

1961

2012-01-08T17:05:00.000-06:00

First of all, although things are slightly better, my intention to start the year off with a bang and my goal to post multiple blogs has fizzled. I'll try to get better the year goes on, I promise.

I'd like to start with two prayer requests. There are multiple men I could list but tonight my mind is on Terrance from Seattle and a former neighbor of ours Jennifer. Terence had his 4th chemo infusion this week as well as a blood transfusion. He's having a rough time, so please find a minute for T. Jennifer is battling stage IV colo-rectal cancer. She is planning to head to MD Anderson in a few weeks and I hope and pray that she will find a clinical trial that proves to be an effective treatment for her cancer. Again, please include them both in your prayers.

This week I had my monthly Oncologist appointment here in Kansas City. A few of my blood markers are borderline low, potassium was one. Initially, we are going to try to increase the level with diet.Mary already came back from the store with lots of bananas, avocado and coconut water. As bad as my appetite has been, I was happy that more things weren't out of whack!

Before I break the big news I have to remind you all of a few things: first the clinical trial medicine that I am taking addresses bone tumors. Though they measure my PSA in Boston, the doctor and I don't discuss it. It is the bone scan that is the key marker.

We knew my PSA would rise because as part of the trial I had to stop taking androgen blockers. It was a risk we were willing take at the time. This week we asked my local Oncologist for my PSA and though Tuesday's measurement was not ready, my December 5th reading was 1,961. That is up from 1,043 in November and around 400+/- when we started the trial on August 30th.

On one hand, it's just a number, the scans are what's important (I tell myself in a semi-convincing manner). On the other hand I think, "Holy Roger Maris! 1,961"! From there the questions begin to mount, questions that I will be discussing with Dr. S when I return to Boston later in the month. Short term, I'm not to worried, what this might mean and how it will impact my treatment long term is what I am concerned with mostly.

Looking ahead

2011-12-31T19:44:00.001-06:00

I was going to add an end of year post about all the things that happened in 2011, then I decided it is all documented within the blog already. I also decided against it because frankly 2011 kind of sucked. Sorry, I have no polite way to say how I feel about the last twelve months.

This post however is about looking ahead to 2012. The last two weeks have brought further improvement to the fatigue and nausea I have been fighting. Things are not 100% but they sure are better. I just need my appetite to return to normal so hopefully I can put on some of the weight I lost. I was able to walk with the disc golf crew both Wednesday and this morning and that felt wonderful both physically and mentally.

I want to keep this short so in closing I wish each of you a happy and blessed 2012!

Merry Christmas!

2011-12-23T11:45:00.000-06:00

As Brad and I prepare for our Christmas celebration, we would like to share with you our appreciation and dedication to David. Our seven year journey since David was diagnosed with advanced prostate cancer has taken us on an emotional roller coaster ride, but more importantly, it has allowed us to grow closer to each other and we have learned to appreciate each day.

Starting the FLHW foundation was solely due to David's vision and his desire to make a difference in the prostate cancer community. As we learned that there were limited treatments for a man with advanced prostate cancer, we all agreed that we wanted to try to support the research for new and/or improved treatments, and ultimately a cure. As we began this new journey of our life, we were inspired by the Prostate Cancer Foundation (PCF). Not only did we partner with them to support the medical research and promote the importance of early detection, but we also turned to PCF to help us to understand what our treatment options were. PCF also provided resources for us to learn what we could do to manage David's disease. Ultimately, what PCF did for us was to give us hope. One of the darkest days a cancer patient can have is a day when he/she must struggle to find hope.

Enclosed below is a link to PCF's annual report. David's story is featured amongst several other PC survivors.

http://www.pcf.org/site/c.leJRIROrEpH/b.7908621/k.A115/Our_Stories.htm

Brad and I are very proud of David's positive approach to battle this disease and his selfless determination to help others along the way. Of the many blessings we are thankful for this Christmas, we are most thankful for being together as a family.

We would like to wish each of you a very Merry Christmas and a hopeful, happy, healthy New Year.

God Bless,
Mary & Brad

Pretty close to normal

2011-12-18T21:28:00.001-06:00

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!

Thoughts from Gate A2

2011-12-13T16:00:00.001-06:00

Well the trip back and forth to Boston went like most, uneventful. Mary took me to the airport for the 7:00am flight and then it was just a quick subway ride to Mass General.

I talked with Dr. S about reducing my dosage and he was willing to do so, however, it came with the following stipulation: if we lowered the dose, we couldn't later increase it if we needed to. He left it up to me, but his opinion was to maintain the 75 mg level since the bone pain has subsided so much. If the fatigue and nausea become any worse, he said to call ASAP.

While yesterday was one of the better days I've had in weeks, today was a drain from the start. As I write this I still have an hour before the flight boards and 90+ minutes before we depart. Though the flight home is direct, it still takes nearly four hours flying against the jet stream. I've never been able to sleep on planes, but tonight could be an exception. The nausea has been mild today and I have just been pushing through the fatigue all day.

The good news is my appointments in Boston have now changed from every 3 weeks to every 6 weeks. So long beantown until late January!

It better be working, I pray it is

2011-12-12T18:29:00.000-06:00

I haven't posted in a while because I am still struggling with nausea and fatigue. Though these are known side effects of the XL-184, it doesn't make dealing with them any easier. It is a constant, daily battle. I now have three different anti-nausea drugs and though they provide some relief, none of them is perfect. As for the fatigue, it has just become a recurring daily theme. Some days are good, others I spend a lot of time napping.

For now, I just have to fight through it until my next appointment in Boston. At that time I am really going to push for the doctor to lower the dose I am on to 50mg. I am not sure if the doctor will agree, but I plan on making a strong case. The nausea continues to cause weight loss (aprox. 23 lbs now) and the fatigue has just gone on too long.

Aside from these two wonderful challenges, we, like the rest of you, are trying to get ready for Christmas. I should correct that and state that Mary is trying to get us ready for Christmas. The house looks great and her shopping is well under way. This is one of my favorite times of the year and not being able to do much to help is really weighing on me. I want to do more to help decorate and shop, but as I mentioned above, it's just not in the cards right now. On Sunday I helped Mary and Brad cover our patio furniture and helped Brad run the extension cords needed to run some Christmas light in the front of the house. That consisted of twenty, maybe thirty minutes of very light work and I was zapped and had to returned to the recliner to recover. I've read a number of ebooks and seen a lot of NFL football, but I want some semblance of normalcy to return to my life!

I'll try to update the blog more frequently between now and the end of the year, God Bless you all.

November Review

2011-11-30T14:05:00.001-06:00

After 12 weeks on Cabozantinib (XL 184) things are going OK. I wish I could say GREAT, but I am also not complaining!

I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn't notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.

On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.

After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.

With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.

75mg may still be too high, I still have occasional nausea issues. I'll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.

Happy Holidays everyone, peace be with you all!

This one stings

2011-11-26T10:18:00.000-06:00

Yesterday the prostate cancer community lost another warrior when Brian from New Zealand lost his battle.

Brian and Kim reached out to me right after his diagnosis and we stayed in touched regularly throughout his courageous battle.

Here is something Kim sent me almost three years ago to the day (11/28/08) "As you know it is one hell of a roller coaster ride -this prostate cancer. I'm just glad he is still here. It's not an easy road when cancer comes into your life but..I guess if things were easy we would take everything for granted and never really understand and savor the special things in life."

Brian, I never had the opportunity to meet you in person, but you were a brother for sure. Kim, words will never fill that void, but may the peace and grace of God be with you during this difficult time. You are in our thoughts and prayers. Brian will be missed.

When a Buck is worth millions

2011-11-20T14:56:00.002-06:00

I'm alone in the house tonight, Mary and Brad are out running errands. I'm not real fond of being alone, in fact, I have grown to detest it. I don't need a lot of conversation, just the simple presence of others, their nearness makes all the difference in the world.

I should clarify that I am never alone, he is always near to me. In this case, I am not making reference to God but to Buck. Buck is our 95 pound black lab. When we got him in 2002 I was 'in between" jobs, so back then I was with him 24x7. He was house broken with in a week. Labs are something else, the finest dog one can own.

This pictures is just a typical moment in my day with Buck. Nose on the bed for a few seconds as he checks to make sure I'm doing OK or if I need anything. He's so lovable.

Thanks Buck, I'm good right now, I'll let you know if I need anything.

Too short

2011-11-18T14:00:00.006-06:00

It's been a heck of a month, and yet a week remains!

One of our prostate cancer brethren, Terence in Seattle, started chemo. His second treatment is in a few days and so far things are going well. Please understand that much like myself, Terence is dealing with bone tumors and pain, raising psa and other PCa related issues. His pain was excruciating and the good news is, he has seen some relief there is just a few weeks. I hope the future brings Terence more relief and many, many years of peace and happiness with Sheri and the grand kids.

In early October I added a post regarding our golf tournament (Lucky number 7). The gentleman to my right in the first photo is Bruce. Bruce and I have known each other since high school, well over thirty years. After a while, life took us separate ways, so it was great when Bruce drove in from St Louis to play in the tournament and have dinner with Mary and I. Two weeks ago Bruce went to his doctor to have a few things checked out. That appointment led to a triple by pass two days later. Bruce has children under ten years old, so that adds to the complexity of the recovery process. I wish Bruce and Lisa peace and joy as they follow their journey down the road to recovery.

I have another good friend Bill ,whom I've know since I used to kick his butt in first grade math flash card wars! He's to my left in the photo from this post (Golf 2010). It turns out last week Bill had his own heart scare. The incident happened while he was traveling to St Louis on business and required an overnight stay in the hospital and a battery of testing. Fortunately, the results were negative and his heart appears to be functioning very well. But it certainly created a stressful 36 hours of concern! Bill has three beautiful daughters. Bill, his wife Enid and all three girls are always in my prayers.

These are just three things going on in my life that have nothing to do with my own battle. There are others I could add, and many, many of you, the readers are expericing similar events yourselves. I share these as a reminder of the how fragile life is and as a way to ask you slow down around the holidays next week and next month. Enjoy time with your family and friends...life is too short.

A brief update

2011-11-13T19:16:00.000-06:00

I realize it had been a few days since my last post and as soon as I posted my last, things went south again. I'm really tired and don't have time for a day by day update so here is the cliff notes version:

The over the counter laxatives barely got me through the week. On Friday my local Oncologist phoned in something stronger, 14 hours later it started working. 'Started working' is a far cry from back to normal but we are getting there. Once I get my bowels back on track I can start dealing with the pain and then better sleep will come as well.

As for the trial medication, as of Thursday I restarted at a lower dose (75mg). Now I have to find patience to let it begin working.

My biggest concern is turning this around before my trip to Boston next week. On top of that we have plans to visit with family over the Thanksgiving holiday. Hoping at this point that I will be well enough to make the trip.

That's all for now. I hope to make small amounts of progress each day,and I'll do my best to make sure I write another update before too much time passes!

Tomorrow, is another day, a better day

2011-11-09T14:56:00.000-06:00

The previous four days were pretty horrible. As I've mentioned here before, I have been taking pain pills a few times a day to deal with back and hip pain. Though they have been doing a great job for me, one of the unfortunate side effects is constipation. I was doing a good job of keeping on top of this particular issue until last Friday. I realized what the issue was immediately but several different types of over the counter medications did not work. There are a number of side effects that can manifest, in my case, I developed severe pain in both kidneys.

By Saturday morning I also began having complications from the increased dosage of trial medication, excruciating nausea. I'm not talking a little tummy ache either. Given these two issues, I also wasn't eating much at all.

I made it through the weekend (barely) and called the clinical trial nurse in Boston first thing on Monday. She told me to stop the medication for two days to allow the side effects to clear up and she would call back on Wednesday with instructions on a lower dose.

By chance, Monday was my monthly appointment with my Oncologist. While there I was given 2 liters of saline solution to help me avoid dehydratrion, along with two types of anti-nausea medication. I was hoping for instant relief, but the nausea didn't subside until around 10pm.

As bad as all this may seem, it causes me to resort to a cliche, 'tomorrow is another day', and today was just that, another day, a better day. The nausea is all but gone, the pipes are working better and I was able to eat both breakfast and lunch so far.

Once again, in the midst of my chaotic life, prayers and determination get me through another lap on the roller coaster.

Where are you going?

2011-11-03T10:21:00.000-05:00

On my way to Boston, I obviously had a lot on my mind. This is what I wrote on the plane yesterday morning:

When traveling and someone asks, "Where are you going?", I simply want to reply, "Nowhere, I'm here for quite some time, if I have anything to say about it.". These last seven years have included so many ups and downs, twists and turns, I have become somewhat immune to emotions, the negativity, and times immune to the seriousness of the ramifications.

I just carry on until the next set back. Bad news? I just regroup, lay out a new plan or adjust the current one. The point is, I move forward at a slow steady pace. I'm not 100 percent sure what actually will happen three hours from now. My instincts tell me that today my medication will be increased, but who actually knows.

A day later, today I have a bit more to be optimistic about. Yes the dosage of Cabozantinib (XL-184) was increased (from 25 mg to 125 mg). I took my first dose of the increased quantity yesterday afternoon and my second this morning. Last night I slept better than I had in weeks. It might have been exhaustion, it might have been psychological based on a feeling of relief, having hope that the new dosage will be effective and I will be able to resume to a better quality of life with less pain and less fatigue. Whatever it was, it was great. I woke up this morning and realized I hadn't had in pain medication in twelve hours. That too was a first in several several weeks.

The doctor appointment fell right in the middle of my schedule for pain medications and I needed to have an empty stomach so I could take the first dose of the XL-184 while at the doctors office. Additionally, I had to wait nearly two hours for the new trial drugs to be delivered from the pharmacy. Consequently, I was four hours late taking the pain pills. I swear I could feel them working within 10 minutes as I rode the subway back to the airport. My flight back to Kansas City was direct but better than that, Mary and Brad were waiting to drive me home! That was the perfect way to finish a very long day.

The side effects that are most concerning are excessive exhaustion and complete loss of appetite. These are supposed to surface within 24 to 72 hours, if at all. I remain optimistic, as patients in previous phases of the trial have found it to be generally very well tolerated.

My next trip to Boston is not for three weeks, in the mean time..... I'm not going anywhere!

Condition and recognition

2011-10-30T10:39:00.000-05:00

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.
http://www.435southmag.com/recentposts/2011/10/14/the-buddy-system/

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:
http://www.cancer.org/MyACS/HighPlainsHawaiiPacific/AreaHighlights/high-plains-media-awards-winners

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.

The short version

2011-10-21T15:32:00.000-05:00

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!

Friends doing their part

2011-10-17T20:20:00.000-05:00

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!

When being a little sad is cleansing

2011-10-15T07:18:00.001-05:00

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.

Lucky number 7

2011-10-12T15:17:00.000-05:00

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!!

From the far corners

2011-10-10T17:21:00.001-05:00

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!

Prostate Cancer Awareness Part II

2011-10-08T14:19:00.000-05:00

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.

Prostate Cancer Awareness Part 1

2011-10-05T19:28:00.000-05:00

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

A Capital affair

2011-09-30T07:11:00.001-05:00

On Tuesday the 20th, I left for my visit to Boston at 4:30am. Though this was my first check-up after starting the latest clinical trial, it was just a check-up and only standard blood tests were run. I won't get a view of my scans until I return on October 11th. The Boston leg of the trip and the visit with the doctor were non-eventful. When I finished I was then off to Washington, DC for 'The Summit to End Prostate Cancer". I attended the same event last year, but was more excited to return in 2011.
Aside from the opportunity to meet and speak with our elected officials (Kansas Senator Pat Roberts),

I was also anxious to finally get to meet in person a few on-line friends that I have know for years.
First was Tony from Las Vegas. We were diagnosed around the same time. He initially contacted me via email, but over the years we have talked on the phone, instant message and of course Facebook. He's a great guy and a wonderful champion for our cause. I hope the people in Las Vegas realize what a resource they have in him!

Finally I visited with Sherry G. from New Mexico. She lost her son to prostate cancer when he was only 36. Sherry, much like Tony, is an outspoken advocate for all men. Not just those fighting the disease but also those men that should be and need to be screened.

Though tiring, it was a wonderful three days in Washington, DC. To Congressman Yoder and Sentors Roberts and Moran - please do your part and continue to fund cancer, and more specifically prostate cancer research.

Prostate Conditions Education Council Hosts 22nd Annual Awareness Week

2011-09-23T09:37:00.001-05:00

Sorry, I'm a little late in posting this message. There is still time for a free screening at several locations throughout the US, the details are below.

~~~~~~~~~~~~~~~~~~~~~~~

Prostate Conditions Education Council Hosts 22nd Annual Awareness Week, September 18-24;

As the most common cancer and second leading cause of cancer death among American men, it's important to be aware of the resources currently available to detect prostate cancer. While experts continue to explore the benefits of prostate cancer screenings, the Prostate-Specific Antigen (PSA) test and Digital Rectal Exam (DRE) remain the safest routes to detecting the disease in its earliest stages – when it's most treatable. This year the Prostate Conditions Education Council (PCEC) – a national organization committed to men's health and a leader in prostate cancer screening – continues its 22-year tradition of coordinating free or low-cost screenings to encourage men to protect their health as part of its national Prostate Cancer Awareness Week (PCAW). This year's PCAW takes place between September 18-24 with screenings available at hundreds of sites across the country. Men can find the sites by visiting http://www.prostateconditions.org/screening-site-finder or calling 866-4PROST8.

"In many men, prostate cancer is an aggressive disease that is most successfully treated when it is detected early on," said Dr. E. David Crawford, Head of the Urologic Oncology Department at the University of Colorado Health Sciences Center, and Founder/Chairman of the PCEC. "As the research community explores various methods to detecting the disease, I continue to encourage men to play an active role in their health by looking to those trusted sources of prostate cancer testing – the PSA and DRE." During PCAW, men are offered a baseline PSA blood test and a DRE administered by a trained professional. Many screening locations also offer testing for cholesterol and testosterone, as many factors play into overall men's health awareness and a man's risk for prostate cancer.

PCEC recommends that after 35 years of age, all men should work with their doctors to determine a screening schedule that is right for them. Not only does PCEC encourage yearly screenings after the age of 35, but also overall health awareness to lessen the risk of prostate cancer. Every year PCAW brings additional attention to the prevention and treatment of prostate cancer by dedicating "Six Days of Prostate Cancer" to key points for men to keep in mind as they pay attention to their health. PCAW screening sites are also equipped with a variety of free informational materials that will help guide men in improving their overall health condition. "PCEC is extremely proud of our commitment to improving men's health," said Wendy Poage, president of PCEC. "Since the first PCAW in 1989, the program has helped to screen nearly 5 million men in the United States, and this number continues to grow both at home and internationally."

PCAW's overwhelming success in the United States has not only helped to safeguard the lives of American men, but has also influenced prostate cancer detection initiatives abroad. In fact, this year will mark the first prostate cancer screening event in Japan where free or low-cost screenings will be made available to more than 100 men at the Showa University Hospital in Tokyo, Japan. "Japan is a country where prostate cancer incidents are on the rise, and screening rates are low. It's critical that we recognize the importance of early detection and the role that screening can play," said Dr. Takashi Fukagai, coordinator of the prostate cancer screening at Japan's Showa University Hospital. About Prostate Cancer Awareness WeekThe Prostate Conditions Education Council organizes hundreds of free or low-cost screening sites annually for more than 125,000 men across the United States and internationally.

To date, the program has resulted in nearly 5 million screenings. To find a PCAW screening site near you and for more information on prostate cancer, please visit http://www.prostateconditions.org/screening-site-finder or call toll free 866-4PROST8. You can also join in the conversation by searching for the Prostate Conditions Education Council on Facebook or 4prost8health on Twitter. About Prostate Conditions Education CouncilA national organization committed to men's health, the Prostate Conditions Education Council (PCEC) is the nation's leading resource for information on prostate health. The PCEC is dedicated to saving lives through awareness and the education of men, the women in their lives, as well as the medical community about prostate cancer prevalence, the importance of early detection, and available treatment options, as well as other men's health issues. The Council – comprised of a consortium of leading physicians, health educators, scientists and prostate cancer advocates – aims to conduct nation wide screenings for men and perform research that will aid in the detection and treatment of prostate conditions. More information is available at http://www.prostateconditions.org/.

Focus, from another continent

2011-09-18T11:38:00.001-05:00

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.

UPDATED: The ugly truth

2011-09-13T13:31:00.000-05:00

The pictures below are a comparison of my first and most recent bone scans. The picture on the left was taken in Boston last month. The one on the right was my original bone scan from February of 2005.

Both cause me to take a deep breath and acknowledge just how serious my situation is.

I’m not going to speak to 2005, it was a long time ago and it is water under the bridge.

However, last month’s scan, as I wrote here before, was and is a bit difficult for me to look at.

The areas of most concern to me are: the base of my skull, right shoulder (the scan is from the back), left lower femur, upper ribs (both sides) and spine. It doesn’t leave much NOT to be concerned about! You can probably imagine why, after seeing this last month, I decided to stop playing disc golf for a while. In closing, I would like to add – ‘Come on medication!!’

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I love the double entendre, today’s post is a triple! Here is the second part.

After receiving my two shots yesterday, we asked the nurse to check on my PSA test.

It was ready for once and as she handed the printed page over she commented, ‘wow, it really went down a lot!’ She hands me the print out and it shows my PSA at 71.4! Mary started to get really excited, but I cautioned that there must be something wrong. XL-184 doesn’t impact PSA to this degree, and surely not so quickly. I had taken 14 doses so far. We stopped by the Oncologist's office before leaving where they confirmed, the the machine in the lab errored and the decimal point was in the wrong place (Oops!!!!!!!!!!!) The real number (unfortuantely) is listed below.

So here is today’s third ‘ugly truth’, my PSA for the past 18 months. On one hand, because our focus is on the current trial (XL-184), we are not investing much energy in dwelling on the numbers. Our hope lies in the new med and that is where we are focused. The trial uses the scans to measure the success of the treatment and the first updated scans will not be done until October 11^th. On the other hand, the PSA trend is very concerning. Below is snapshot of the PSA trend and treatment changes for the last 18 months.

The Oncologist office called this morning. Apparently the lab was REALLY screwed up Monday. They re-ran my PSA three times. It turns out it was 595, not 714. Quite a difference and quite a relief!

The true warriors

2011-09-08T14:52:00.000-05:00

While I was quietly having a little self-celebration for making it four days without Advil or pain meds, I received updates on a few friends whose Prostate Cancer battles have taken new turns. For the first time in several weeks I was able to get through four straight days without taking Advil and sleeping without Oxycodone. Last night the streak ended when the pain returned in the back of my rib cage, where it continues today. I am leery to even mention my aches and pains after the news I received on my friends Eric and Terrance.

I met Eric at a Prostate Cancer conference in Los Angeles back in 2006. A now retired firefighter and motorcycle enthusiast, Eric recently began having severe back pain that landed him in the hospital. It initially appeared to be related to PCa and though he still needs to meet with a few other specialists, the source of the pain appears to be from an old accident and not the cancer. Skipping the details, his T4 vertebrae is collapsing and pressing on his spinal column. I can imagine all the scenarios that must have gone through his mind in the last few days, attributing everything to the cancer. Though now that it appears that it is not PCa related, that does nothing to relieve his pain. Eric, God’s speed brother, I’m praying for you.

The second person is Terrance. Though just two years into this journey, this disease is wreaking havoc on his body. Though he somehow found the strength to go salmon fishing the last several weeks, he now faces surgery to relieve the pain that is apparently being caused by swollen lymph nodes and an enlarged prostate. If that wasn’t enough, this will be followed by chemotherapy to fight off the advancement of the prostate cancer. Terrance – I pray for a speedy recovery and that you are back casting lines before winter!

I share these stories and ask that you spend a minute praying for or sending positive energy their way. My little bouts with Advil, mild pain meds, etc. are nothing compared to what these guys are going through right now. These are the true warriors.

The starting gun

2011-09-02T08:16:00.000-05:00

On Tuesday I was up at 4:15am and out the door by 4:40am in order to get to Boston, MA for my 1:00pm appointment.

There is nothing eventful to report about the travel, a connection in Atlanta, on time arrival, 45 minutes on the bus/subway and I promptly walked into the doctor’s office.

Due to the nature of the clinical trial, the vampires required 9 vials of blood and a urine sample. The results of the blood test are required before the trial drug can be released. The lab was able to turn the blood test around in an hour. During that time, I met with the Nurse Practitioner and reviewed the blood test, CT and bone scan from August 2^nd. There were no surprises in the blood work and CT scan; PSA was 440 (expected) and CT showed swollen lymph nodes in my lower abdomen (also known).

The bone scan on the other hand was, for the lack of a better term, frightening. I have seen and studied my bone scans since I had my first scan in February of 2005. This scan showed extensive areas of new tumors where there have never been tumors before. I was not surprised, with my PSA level being as high as it is for so long, what I saw was somewhat expected. That being said, seeing the image on the screen. actually looking at the cancerous tumors in black and white and acknowleging the fact that you are looking at yourself, it was rather shocking and a bit difficult to quickly accept.

The highlights, or low lights in this case, are as follows:

- Extensive areas in upper to lower mid spine (much more than before)
- Left lower femur shows a rather large new spot
- Right shoulder and collar bone show new areas of growth
- Upper right ribs show quite a bit of new growth
- Several small areas on the vertebrae between shoulders and base of skull.

These were the most concerning to me.

I ask you to let that sink in for a minute and perhaps re-read it.

The good news is that several minutes after reviewing the scan, the clinical trial nurse brought in my first 21 pills for the clinical trial drug, Cabozatinib or XL-184. The trial I am enrolled in is the third Phase II trial of the drug. The purpose of this phase of the trial is to gauge the effectiveness responsiveness) of dosages. My dosage is 25mg. Aside from changes in the physical aches and pains I won’t know if the drug is working until new scans are taken on October 11^th.

After leaving the hospital I walked around the neighborhood (Beacon Hill) briefly before heading back to the airport. I wish I had more time and will try to make a point to check out more of the neighborhood on future visits. My friend Jason was in town at the same time but was leaving a bit earlier than me. We had discussed trying to meet my for dinner but he called to say he was running late and was barely going to make his flight. An hour later, after going through security and eating something I was walking around the terminal killing time. Suddenly I felt a hand on my shoulder was quite shocked to turn around and see him standing there smiling! What a great way to finish a long and stressful trip! Jason - thank you for being there and being such a wonderful friend. We were brought into each other’s lives through fate and a hat, destiny can be a beautiful thing! When you look at the photo of Jason and myself, it’s hard to believe all of this is going on inside me. The irony of my life!

It’s Prostate Cancer Awareness month so please support the cause. You can do so in a number of ways; write your elected official and ask them to continue funding the much needed research, change your porch light to blue, Support any number of PC group, Encourage a loved one, friend or acquaintance to get tested. Most importantly, pray for all the men that are currently fighting and suffering from this dreadful disease!

Another lap begins

2011-08-29T15:20:00.000-05:00

I apologize upfront but prepare yourself for a cliché ridden post.

For some people diagnosed with cancer, their journey can be more of a sprint. They have treatment(s) and then try to figure out how to live between check-ups and the 5 year ‘all clear’ milestone. This is true of many cancers survivors, not just those diagnosed with prostate cancer. There is no judgment in my observation, I’m just pointing this out as a way to contrast the experience to my journey.

My journey is a marathon and a mega-marathon at that! Imagine you run, and run and run until you are almost completely exhausted physically and mentally. Then, all of the sudden you round a corner and there is the finish line. As you cross however, it is merely to begin another lap and not to break the tape and throw up your arms in joy. For me, and the other survivors in similar situations, when we cross the line, we know there is no celebration. For us, we have to suck it up, dig down deep and begin another lap around the course, the course that is our treatments.

So tomorrow, when I get off the subway in Boston and cross the street (the finish line) and enter the hospital to begin my next lap, I will suck it up once again. I will dig down in the depths of my soul to find the strength, the courage and the hope needed to get me through this next lap on the journey. The terrain will be tough, there may be storms, the headwinds will stall my progress and the tailwinds will help me along. I will complete the lap.

There is a question I constantly ponder. The question is once again going to remain unanswered for the near term and it may only be revealed in the months ahead – ‘The next time I cross the finish line, will I be celebrating or will I once again dig deep and trudge on and on for yet another lap?’

Come On Irene!!

2011-08-26T08:59:00.000-05:00

Not the 80's classic by Dexy's Midnight Runners, but the Hurricane!

I thought before whining about myself, I should add that I pray for all the people, businesses, animals, etc. that lie in her path.

Though it looks like she'll pass through Boston on Sunday, I hope the havoc is minimal and by Tuesday morning, all flights are on time and travel to and fro goes off without a hitch.

Regarding pain management, Advil is down to two every twelve to twenty-four hours. I also have only had to take pain pills to sleep twice in the last four days. Tuesday can't get here soon enough!

My Compass

2011-08-22T19:13:00.002-05:00

There are those people you meet in your life, you know the ones, teachers, friends, professors, etc., those people that have a profound impact on your life. I married mine.

She, without meaning to do so, changed me in so many ways. She also supports, encourages and helps me through the cyclone that has become my life.

When we met I was a wandering soul. I was working, had finished two years of college but had no long term direction or short term goals. Since then, I earned my undergraduate and graduate degrees, have a relatively successful career, was blessed with a wonderful son, a comfortable home and a non-profit foundation provides me with an immense sense of pride. The cancer battle aside, we are genuinely happy and content.

Now, more than ever, she needs me for that same support. I am with you Mary, I love you more than ever and I am here to help you get through your challenging times, as you have always been there for me. I am blessed that you came into my life over 24 years ago and am honored that you married me on that wonderful Saturday in August, twenty years ago.

Here's to many, many more years ahead for us to share.

Musical Associations

2011-08-20T13:04:00.002-05:00

This morning I thought I'd play a game I call musical associations. It's going to do two things, expose my musical tastes and preferences (nothing new here) and allow me to free associate a part of a song with something that is or has gone on in my life.

First, I launch Pandora, the on-line music service. Today's station is 'K-SHE 95'. I created this years ago and for those of you not from St. Louis it was THE preeminent rock and roll station of the 60's, 70's and 80's. I moved away from St. Louis in 1990, so I'm not sure what happened to the format.

Up first: Ten Years After - 'I'd Love to Change the World'
This is from their 1971 album A Space in Time
The line that immediately stood out is this one, 'I'd love to change the world, but I don't know what to do, so I leave it up to you.'

Though a song written forty years ago, to me this is so indicative of the present. People find it easy to complain about this or that, but very few will stand up or take the time to make a difference. Perhaps they just don't know how to get started '..but I don't know what to do...'. Instead of sacrificing their time, energy, talents, resources '...they leave it up to you...'. Remember, I'm just observing here, not judging.

Next up: Led Zeppelin - 'Nobody's Fault but Mine'
A cover song from the late 1920's, also played occasionally by The Grateful Dead.
"I got a monkey on my back"

It's an old blues song that LZ added a heavy rock and roll influence to, as well as changed up the lyrics. Now I could have gotten the line "I got a monkey on my back" from a number of songs but remember how this works; hear the song, make the association. If I have to explain my personal monkey, someone hasn't been paying attention. I'd really like the monkey to just go away for awhile so I could live a normal life, or something that resembled a normal life. With ten days to go, I am feeling more anxious and more obsessed with the disease. August 30th can't get here soon enough. I know removing the monkey completely is not likely to happen, but perhaps I can get him off my back and he can walk beside me, though behind me would be better!

Finally on came The Outlaws - 'Green Grass and High Tides'
This was the tenth and final track from their 1975 debut album.

For me this song takes me back to high school. My brother Doug and I must have listened to this song a thousand times or more. For those of you not familiar with the song, it is a nine minute, forty-nine second southern rock classic. The wiki link above has a great write up on the song, but in a nutshell, it is a tribute to Jimi Hendrix, Janis Joplin and others. These lines from the song have always stuck with me:

Those who don't believe me
Find your souls and set them free
Those who do, believe and know
That time will be your key
Time and time again
I've thanked them
They helped me find myself
For a peace of mind
Amongst the music and the rhyme
That enchants you there

This morning music was my escape. I hope as you read this you consider three things in your life:

1) Do something for others, for strangers. Make a difference in someones life, people need to be nicer.

2) Get the monkey off your back. In my case it's cancer, yours could be a multitude of things, major or minor. Maybe it's just a phone call to a friend or family member that you should have made months or years ago. Don't wait, life is far too short.

3) Find an escape, spend time on yourself. Get away from the television, cell phones and computers; listen to music, read a book, take a walk, refresh your mind.

I now step down from my soap box ..... Sunshine came softly though my window today....

34,559 minute countdown

2011-08-17T08:16:00.002-05:00

Way too much going on in our world this week. I am currently enjoying a few minutes of alone time at a local coffee shop.

On Monday Mary had a surgical procedure that we had put off for nearly a year. Details are for her to share, not me. I will however add that she showed me inner strength that I never knew existed, and remember we have been married for 20 years! Last night after bringing her home from the hospital we got her settled on the sofa and I went up stairs to put a few things away. I couldn't have been up there for more than 2-3 minutes. I turn around to go back downstairs and who is standing there? Mary! She wanted to lay in bed and not on the sofa while at the same time test her ability to get up the stairs. She has a few weeks of recovery ahead of her but she's well on her way.

I need to thank the "P" family for the dinner and other food to munch on, it was SO much better than the chicken noodle soup she was going to eat! Also, thank you everyone for the flowers!

School starts tomorrow and cross country practice started on Monday. I've never been a runner and am really glad Brad likes it, I wish him well. High school is going to be a great challenge for him, I know he will do great and these 8 semesters will just fly by! (he doesn't like me to say to much about him here so I'll leave it at that, you read between the lines).

I was able to play disc golf again on Sunday and improved my score by two strokes from the week before. Monday however was the beginning of a new pain incident. As with the past it has been controlled with Advil every 8-10 hours, however there were times that even the Advil was not quite enough. I just looked at Mary and realized I needed to tough it out. this morning is so much better so I'm hoping the worst is behind me for now.

The combination of the new medicine I started in June, along with the Prednisone withdrawal are the cause, well that and the increase in the cancer activity. With thirteen days until my next trip to Boston, I can now see the light at the end of the tunnel and it no longer appears to be a freight train!

In Like Flynn

2011-08-11T14:58:00.001-05:00

Before the update, I was curious about the origin of the expression I used in the title, so I Googled it.

“The earliest known use of "in like Flynn" in print is in the December 1946 issue of American Speech. Penn State prof Ed Miller reported that students of his who had served in the army / air force during World War II used the expression to mean, "'Everything is OK.' In other words, the pilot is having no more trouble than Errol Flynn has in his cinematic feats."

Now, on with the show. It’s 100%, I’m in the Cabozantinib (XL-184) trial and I can start to take the pill on August 30^th. Relieved? Of course we are, but it really won’t sink in until I have pills in hand and take the first dose! The travel will be a little taxing on us, but again, I can go round trip in one day, and so far it appears as though the flight will cost around $200 each trip. The subway goes from the airport to within 25 yards of the hospital so no ZipCar will be required. I hope the time on the ground allows me to see a little bit of Boston and perhaps coordinate trips with a few friends for dinner, etc. I’m really looking forward to the new chapter in the journey.

Tomorrow I will see my local Oncologist for my monthly check up and a few shots. I’m not expecting my PSA to be anything but be slightly higher. This is based on the fact that I will have been off Zytiga for 10 days. Though I had a stretch of 8-9 days without Advil or pain pills, I did have to start taking Advil again on Tuesday. I’m only having to take 3 Advil every 12 hours and am thankful it has not progressed further. As I stated before, the time between now and when I start to take the new meds on the 30^th may be a challenge psychologically, but we'll get through it, and hope for a good response to the new treatment!

Back in the saddle again.

2011-08-08T22:01:00.002-05:00

Tomorrow we hope to get the 'official' word about my acceptance in the Cabozantinib (XL-184) clinical trial. In the first week since I stopped taking some of my previous medications I can't tell any difference. If anything, I feel a little better.

I mention feeling a little better with a slight amount of hesitation. Although we received mixed opinions from the medical community, Mary and I are convinced that my recent bouts of pain are related to the two new drugs I started in June.

The only proof we have is the pattern of the pain I experienced both times I received the treatments. Five days after the injections I begin to have back pain. The severity and location move around from low to high and side to side. Sometimes it feels likes it's my ribs, then my back, etc. It lasts between seven to ten days following the injections and then I have days and days of 'normal' activity.

This past weekend was one of those 'normal' periods. I was even able to play disc golf on Sunday, and played pretty well considering I had not played in a month. I really miss playing twice every weekend but I'm not complaining, I'll take what I can get.

Three weeks and counting, I hope it flies by like summer did!

Beantown

2011-08-04T13:25:00.000-05:00

Sunday night Mary, Brad and I flew to Boston. The purpose of the trip was an appointment at Massachusetts General Hospital on Monday afternoon and bone and CT scans on Tuesday.

We arrived a little late on Sunday evening, so we just got some food to go and hung out in at the hotel. Since my appointment wasn’t until 3pm, we walked around the neighborhood. A member of the hotel staff recommended a local cafe, 2nd Street Café. All I can say is awesome sandwiches and wraps!

As we are accustomed, we arrived at the doctor’s office, checked in, were shown to a room and waited, and waited etc.. The meeting with the doctor was encouraging, and unless something really odd shows up in the scans, I will begin the trial on August 30th. We will know if I qualify for the trial next week.

Monday night we went to Fenway Park to see the Red Sox play the Cleveland Indians. It was a long day for everyone but they stuck with me until the 7th inning. Also, we had to be back at the hospital at 8:30 for blood tests and scans so we didn’t want to be out too late.

I’m not sure what happened, but somehow even after receiving my four inch medical file, someone forgot to provide the pre-medications for the CT scan. Since I have developed an iodine allergy, I have to take Benadryl and prednisone starting the night before. I guess we should have remembered too but we had a few things on our minds. The bone scan went off without a hitch but they had to perform the CT without the contrast. I was told the details of the image just won’t be as well defined as with the contrast.

I was done by 1:00pm so we took the subway over to Kendall Square (near MIT) and then took the subway out to Harvard. We walked around for about an hour and the campus was quite stunning. I hope the environment provided Brad some encouragement and inspiration, not that he needs any!

After Harvard, we headed back to the airport for our 7:25pm flight back to Kansas City. A small storm delayed the arrival of our plane so we didn’t get back to KC until a little after 10pm. When we left Boston, it was in the low 80’s and quite enjoyable, while in Kansas City the high was 110 yesterday! When we stepped out of the terminal last night, it was almost like sticking your head in a hot oven! I know we are all ready for this heat to break!

My Neverland

2011-07-31T08:38:00.000-05:00

This morning I watched 'Finding Neverland', the story of James Barrie who wrote Neverland (Peter Pan). Based on the crocodile tears, this one hit a wee bit close to home. I don't mind sharing that fact. Yes, I cry during a good, emotional movie. For those of you that have been around here for awhile, you know that I have been known to cry while reading a book! There was just something about the story, it is a great movie I would recommend to all.

Tears, and the emotions that bring them to life, are cleansing. To me they are a release for tension or stress and there are times in this battle when that release is critical. We have a lot ahead of us this August. It all begins in a few days with a trip to Boston. That trip will involve tests, waiting, meeting with the doctor, waiting and we hope, time for a little fun. This doctor appointment and clinical trial I am attempting to get into is perhaps THE most critical point in this journey.

With my PSA count remaining high and the increasing amount of pain I have been experiencing, it is very important that I change treatment plans now. Without this tria,l my alternative is chemotherapy and radiation. Since I did chemo back in 2008, I have the experience, it does not scare me. The issue is chemo did not provide much benefit. As for radiation, this would address the pain, but has it drawbacks. Those include compromising bone marrow and therefore making a chemo treatment less effective, fatigue, short term relief and more.

I just continue to pray this path I find my journey taking is the right one. Not because of the finanacial and travel impacts or the possible side effects, but because the trial offers so much more of a potential impact on the state of the disease than the chemo/radiation option.

I'll provide more details once we return from Boston.

Whoa, where did that come from??

2011-07-27T15:41:00.001-05:00

I have to start this post with a recap of the Warrior Combine event. Although the video link in my previous post did a great job of recapping the event, there are of course a few things I would like to say.

First, I need to thank Jason for bringing this idea to me in June of 2010. If it weren't for Jason, the Warrior Combine event would have never have happened last year or this year. Next, I need to thank the participants. The video only begins to capture what these guys put into this event. I am envious of their abilities! Next my appreciation goes out to the FLHW Board and the other volunteers, I tip my hat to you as well. I appreciate your generousity to our mission and withstanding the exceptionally warm morning of July 23rd. Finally, to Fox4-KC and John Holt, I am sincerely grateful for the coverage we received! It is personally so important to me to reach out to the men of the community regarding the importance of being tested, and through the time we were given on Fox4 news this Saturday, I am confident that our message reached many!

Jason and I had big plans for this year's event and although twenty three participants is not huge, we nearly doubled the participation from last year. Additionally, the event raised over $2,000! Jason and I talked yesterday and both agreed, it's not just about raising money...the publicity we received was priceless. There is no telling how many men we impacted with the message.

It's not too late to help out. We still have a few shirts left (Sizes range from medium to XL and XXL) and we have Warrior hats available as well. Pictures of both are on the order page, available at:
http://www.flhw.org/2011-events/105-warrior-combines.html
~~~~~~~~~~~~~~~~~~~~

Now to the title of this post. Sunday I began to experience a lot of pain in my lower back and left hip again. It was nearly identical to last month, only more intense. By yesterday and through Monday I was taking four Advil every four to five hours and taking several Percocet in order to sleep. Even with the meds, sleep was rough. The good news is last night I slept much better and as of now, I haven't taken anything in over eight hours.

This is very similar to what happened after I saw the doctor in June. Five days after the appointment and injections, I experienced back and leg pain. Again, this month it was much more severe, but I really think I have turned the corner!

Warrior Combine video

2011-07-25T16:46:00.001-05:00

Here is some of the video coverage we got on Saturday!
Details and my thoughts to follow!

When good isn't good enough, then you get more

2011-07-21T09:58:00.000-05:00

Tuesday was my four week check up with my Oncologist, along with the usual blood tests and shots. The appointment was uneventful for the most part, the doctor was away and we saw the Physician’s Assistant. She is great, but no decisions were obviously made with the doctor away, this was all expected from the last appointment.

Last month I switched a few drugs around; I stopped Lupron and started Firmagon (testosterone blockade), stopped Zometa and started Xgeva (bone strengthener). After making these changes four weeks ago I did have mild to moderate pain a few times during the weeks that followed. As almost always happens, the week leading up to the doctor’s appointment was as close to normal as I’ve had in a while. I felt great and remain that way this week as well. The side effects from the Firmagon shot (tenderness, redness and slight swelling at the injection site) seem to be much less than June. Or maybe I am just more tolerant this time around.

The exciting news is my PSA was actually down to 421 (it was 433 the month before). Though this is somewhat good news, the drug I started back in January (Zytiga / Abiraterone) is not having the impact we had hoped. However, I am very grateful for the result. An additional marker we track closely is Alkaline Phosphatase. Normal levels are approximately 40-110, mine had been between 50 and 60 for years. With the rise in my PSA this year, the AlkPhos has also gone up. According to one specialist my type of prostate cancer is creating PSA primarily via the bone tumors. Hence, my need to find a treatment that targets bone.

Speaking of treatments that target bone, yesterday we received a call from the doctor’s office in Boston. Without looking too far ahead, it was good news and we now have an appointment with the doctor leading the trial the first week of August. We are cautiously optimistic as there is not a guarantee that I will qualify for the XL-184 trial the purpose of this meeting is to determine if I am eligible. The appointment will include a blood test, a bone scan, CT scan and exam by the doctor. Although I appear to be an ideal candidate on paper, things can always pop up. Once again, we are cautiously optimistic!

Assuming that the tests and the appointment go well, I will have to return 4 weeks later to start the trail. The delay is where this gets a little risky. I will have to stop taking a number of medications for those four weeks. This includes:

- Zytiga (Abiraterone) and Prednisone (the current hormone blockade I have been on since January)

- Lovenox (a blood thinner I have been on since last fall when I was on DES and had several clots in my leg)

- Finisteride (I have been on this drug for almost 5 years, the short story is it blocks a form of testosterone)

Stopping the blood thinner is the least risky in my mind. The clots I developed on two separate occasions can be attributed to my treatments at the time, one being Taxotere and one being DES. I have been off DES since December. As a precaution, Dr. V suggested I add a low dose aspirin to my daily regimen. Finisteride is also a minor risk since my testosterone level is always extremely low. Zytiga is the big risk but the potential of this new drug is so great that it is a risk I am willing to take.

So if the crazy schedule of ours wasn’t busy enough, now we add a trip to Boston the mix!

Plans make a bitter pill

2011-07-15T14:04:00.001-05:00

I guess a little medical update might be appropriate right about now...

I'll start with what I 'know' instinctively based on how I am feeling and sense what is going on inside me. First, I have several swollen lymph nodes on the left side of my neck, where the neck and shoulder meet. These showed up in my last CT scan (December). They have increased in size, I can feel them but they don't bother me. If they became a problem surgery or radiation are options, but they are not a problem at this point. My guess or instinct tells me there are a few others in my abdomen that have increased in size. This is soley based on the occasional ache and pain that comes and goes is my lower abdomen/lower rear ribs.

I have a similar feeling regarding my bone mets or tumors. I know the next scans are very likely to show either growth in existing areas or new areas altogether. As much as my PSA has gone up over tyhe past six months and the inability to start a new treatment protocal, I believe these concerns are almost guaranteed.

So what lies ahead? What are we doing about it? First in order to remain sane and functional, we have to remain both calm and hopeful.

On Friday, July 1st, Mary spoke to the clinical trial nurse in Boston. Here is what we know right now. At the end of July we tentatively should get the green light to go to Boston four weeks later. At that time I will have several additional tests to confirm I am eligible for the trial. If I am, I would begin taking the medication (oral) at that time. I would then have to return to Boston every three weeks for four more visits. After that the appointment frequency would change to to 6 week intervals.

So four weeks of uncertainty, followed by four weeks of 'terror' and follow that up with a lot of travel time.
Having a new treatment that results in less pain and better PSA scores will make it all worth it!

No time to slow down

2011-07-12T14:05:00.002-05:00

After spending the start of last week in Chicago, I looked at our calendar and July is packed with plans. Every weekend through the end of the month finds us busy, busy!

Between parties, dinners, visits with family, celebrating a friend's 40th and an event for our charity, and the highlight....closing the month with Kenny Chesney and an out of town visit from a of friend and fellow PCa survivor.

The first week in August is our 20th wedding anniversary, then two weeks later school will be starting. It might as well be late August!

I'm sure the following thought has been penned in a more eloquent fashion, but right now I find myself living as such.... Don't wait for the moments in life to happen, make them happen!

Would someone stop the carousel and remind me I'm in the midst of a little crisis! On second thought, don't bother, the ride is a blast!

Beautiful Day!

2011-07-09T14:07:00.002-05:00

I really don't fear my emotions, I embrace them for the most part. However, there are times when they conflict and times when they surface at the wrong place and time.

Right after this picture was taken, right in the midst of the U2 concert, I was briefly struck with a tremendous amount of emotion. I fought it back but it was difficult. I was both happy and anxious.

My joy was the obvious culmination of nearly eighteen months of waiting for the moment to actually happen. The concert was cancelled last summer so we had to wait. In those eighteen months, a lot has happened with me and my battle, and there we were, finally.

At the same time I knew at that moment he and I were making memories. For him there are aspects of that night and the previous day that will last him many, many years, perhaps a lifetime.

For me those two days will also last a life time, but in all likelihood, a more abbreviated one. For you, the reader, this thought might be hard to understand. You might even be questioning, Was he really thinking that, in the middle of the concert?

My eminent demise is a thought that is always there lurking slightly below the surface. I'm a rather seasoned expert of keeping the thought and accompanying emotion at bay, but there it was, and there it remains. It's the elephant in the room around here. I talk about it only occasionally, but think about it often.

So why in the world would I quote the U2 song in the title of this blog and then go on to write a rather striking if not depressing entry? First, because I try to share nearly everything. Secondly, and much more importantly, to show you and those that find this blog next week, next year and so on, that it's ok to have these thoughts and experiences as long as you can keep them in perspective before returning to hope.

'Hope', that which gets us through this and every 'Beautiful Day'.

It was a beautiful day
Don't let it get away
Beautiful day

Peace be with you all.

You too!

2011-07-07T13:29:00.000-05:00

I don't like the term 'bucket list'. It infers that ultimately there is an end. I prefer to focus on what to do in the present.I'm not saying I don't have a list, as a matter of fact I posted a list here years back that I should probably review.

With this in mind, I spent my the last two days in Chicago with a dear friend. We were there to see the band U2 in concert at Soldier Field. This was my first time seeing this band in concert and they didn't disappoint, it was great! The stage cannot be explained, it is enormous! For those of you who are not fans I'll just say this, U2 is one of the few bands that after having been together for over 30 years you can sense that they enjoy what they are doing and more importantly, enjoy being with each other and being a band. Short of providing the set list, I'll just say it was a splendid mix of new and old.

One of the best parts of the trip was the fact that we never went to the miracle mile/Michigan Ave. I say that because of the dozens of times I have been to downtown Chicago, I have always stayed in and around Michigan Ave. This time we stayed one night at a friend's place up near Wrigleyville and last night at another friend's place in Old Town. I appreciated both their hospitality and the exposure I had to a new part of Chicago, truly a new experience for me.

We rode the El, took a few cabs and walked, a LOT! I would guess we walked 10+ miles yesterday alone and for me, I loved every step of the adventure! We ate great food, enjoyed cold beverages, met new friends, laughed, talked and generally soaked up the beauty of the windy city.

I'm trying to figure out how to get to St. Louis to see the band perform once again on July 17th!!

What does it all mean?

2011-07-01T08:34:00.001-05:00

In regards to the video link I referenced two posts ago, Dr. Myers recommended a book titled, 'Man's Search for Meaning' by Viktor Frankl. The book is divided into two sections. The first is Frankl's recollection of his time spent in concentration camps during WW II. The second part is his reflection on life and man's search for finding the meaning of it all. It is wonderful.

There are a number of quotes that I love from the book. The first one I would like to share is this: He who has a 'why' to live for can bear almost any 'how'. - Nietzsche

So then I receive an email from my friend in Australia. In my last response to him I let him know that he is becoming my go to resource when I am having 'blogger's block'.

Here is the home run from his most recent email:

There seems to be something of a pattern for me to the cycle of cancer: Shock, Adjustment and then Acceptance (and the ability to live with an acceptance of finality). It can be liberating too (don't ask me to explain that!) I've now been on that roundabout a few times and I know that you and others have been through the cycle many more times. When I first started reading your blogs, I had some difficulty in understanding your coping mechanisms. I think I now understand.

I occasionally have dark thoughts but now I understand the cycle, I sort of know that my emotions will stabilize and I will be able to deal with that new reality but as you'll fully appreciate, while that's an intellectual understanding, the emotional dimension is not so easy until I have progressed to acceptance. It's different each time.

I am so thankful for people like him. It may be fate, or it may just be fortunate timing. Whatever it is, I truly couldn't say this any better!

Piling on.

2011-06-29T09:15:00.001-05:00

Last week was one filled with nothing but crappy news!

First it was my PSA increase on Monday (up to 430). It’s just a number and overall I am more focused on the other aspects of the disease like pain. While things seemed to be better over last weekend, by Wednesday my back reminded me that even when I feel good, I need to just chill out for awhile. That continues to be a struggle for me, I cannot be idle. I have been taking 4 Advil every 8-10 hours in order to function.

Last week we took one of our favorite books (‘There’s No Place Like Hope’) over to a neighbor who was about to have surgery to remove her colon. Wednesday was the surgery and it turns out things were worse than expected and the cancer had already spread. They scrapped the surgery and now she will start intense chemotherapy. They are younger than us but also have an ‘only’ (single child). I ask that you add them to your prayers and/or thoughts. They have a long, tough road ahead of them but their positive attitude is both infectious and admirable.
To the ‘C’ family, this one’s for you:

Oh great Saint Peregrine, you who have been called "The Mighty" and "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.

Just like me

2011-06-26T07:15:00.001-05:00

Though not a patient, I have long been a follower of Dr. Charles (Snuffy) Myers. As both a PCa survivor and a physician he has a unique perspective on this disease.

In the last year he started posting video blogs every 1-2 weeks. His latest is available at the link below and it is amazing how comparable his thoughts and points of view are with those I shared during the presentations I gave in March and again in May. As a matter of fact, if I didn’t know better, I'd swear he reviewed my notes! That is clearly a joke!

Dr. Myers mentions the following in this video about ‘the will to live’:

The importance of resiliency or the desire and will to go on is primarily made up of:

o A reason to want to live, to go on

o Religion, particularly a pro-life religion (I was most surprised by this comment)

o Family; a loving supportive spouse, children and grandchildren, etc.

o Support groups; face to face or on-line

o Something in your life that fills you with euphoria (he mentions hiking, for me it’s got to be disc golf)

o Preserving reasonable hope and the fact that median survival statistics are for the most part useless.

I encourage you to go watch the video.

http://askdrmyers.wordpress.com/2011/06/22/pca-the-will-to-live/

Old Reliable

2011-06-19T21:45:00.003-05:00

Aside from the obvious list of supporters; Mary, Brad, family, friends, etc, there is one more person that has consistently been with me through this journey.

I was already a fan when I was diagnosed, but right around that same time I acquired the album, 'Songs from the Old Blue Chair'. At the time I was working in downtown Kansas City and had a forty-five minute commute twice a day. Everyday there he was with his songs about Boston, pirates, sailors, beaches and more. The songs and the album became my escape from the reality that was crushing me emotionally and weighing on my physically.

In no way would I ever claim to be his biggest fan or proclaim that I know every word to every one of his songs. As I type this entry the song 'Boston' just came on my iPod. As I sit on this airplane, taking my last of nine flights to Atlanta, I am really struggling not to cry. This song, if there was 'a' song, is the song that best encapsulates the last six and a half years of my life. The song is basically about a girl who left everything in Boston to embrace the island life. If you are a long time reader you know my love of the beach, the sand, sailing, etc. I want that life. To leave everything and take Mary and Brad and leave cancer and life behind. To basically re-live the week I just spent on Anna Maria Island. Coffee on the patio listening to the surf, mornings by the pool, walks on the beach, fresh seafood daily and a carefree, laid back life of little to no worries. It's a dream I would hope to fulfill someday.

Thank you Kenny Chesney for your beautiful music and for providing the momentary escape from the reality that has become my life.

~~~~~

Is it just me or do you also see the irony that the location I am most likely headed for my next clinical trial is Boston? Hmm? Maybe nothing, but maybe fate is stepping it up a notch.

(footnote - the tears won, I couldn't completely fight them off. They were happy ones!)

Not knowing might be a good thing. Then again....

2011-06-17T11:22:00.000-05:00

From half a world away, a quote that so succinctly captures my mental state, I had to include it in today's post.

I have been exchanging emails with Ivan from Australia and in his most recent communication he stated the following:

“I sometimes find myself caught between wanting to know everything and wanting to know nothing. It's a confusing place!”

It’s almost like he read my mind. For those of you not battling cancer, the beauty of this quote may not be clear, but for me this is perfect. At times I think I want to know what is going to happen, when it's going to happen, etc. On the other hand, perhaps I'm better off not knowing the details and the timeline.

~~~~~~~~

Yesterday was my last trip to Atlanta. The Oncologist's office had asked a few weeks ago if I could see the doctor one more time to 'close out' the trial I had participated in for Zytiga (Abiraterone). I agreed and looked forward to the appointment as an opportunity to talk with the doctor one last time, as he was not in the office for my last visit. He started off by stroking my ego a bit. Apparently the doctor I met with last time (his partner) made rather complimentary notes that I was an exceptionally informed PCa patient. He said something about not having seen a patient like me in a long time. (I am hoping he meant that in a positive way!) Then there were additional notes about my good looks and handsome off spring, as Brad was with me last month. JK!!

We talked for twenty minutes or more. He was in agreement with our plan to pursue XL-184. He also said we should keep our eye on MDV 3100, and if we need to consider chemo, there are several options. In closing I must reiterate that if I lived in Atlanta, or the region, I would see this doctor without hesitation! Although I have not responded to the treatment as we had hoped, the experience participating in this clinical trial has been a good one.

For Jimmy R

2011-06-12T06:54:00.004-05:00

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.

Great insight on Cabozantinib (XL 184)

2011-06-10T12:27:00.000-05:00

There is a flurry of XL 184 information circulating after last week’s ASCO conference in Chicago. This link to MedPageToday includes a brief video interview with Dr. Maha Hussain, University of Michigan.

http://www.medpagetoday.com/MeetingCoverage/ASCO/26962

On a personal note, this is the drug that we are pursuing for my next treatment. There are currently open Phase I and Phase II trials, though neither are available in Kansas City.

The Phase II trial is recruiting in multiple locations, it looks like Las Vegas might be the best option for me. The Phase I trial is only available in Boston and though it is currently full, they will likely recruit 11 additional patients to expand the trial in late July. My Oncologists’ office is currently helping us determine if I qualify for either trial. Stay tuned!

If this doesn’t pan out, and because I am not responding to the Zytiga, my other option will likely be Taxotere, i.e. chemotherapy. If we do go down this path I will discuss using Taxotere in combination with some other drug in an off label or experimental basis. I'm not sure if there is anything available, or if this even makes sense, but we will be discussing these options with my Oncologist.

I have thought about Provenge but becasue it does not immediatley have an impact on PSA, it is not a path I am ready to pursue.

Overall my health remains stable. I continue to have a few minor aches and pains from time to time but it is easily alleviated with a few Advil.

My thoughts and prayers are currently with Terence in Seattle and Brian in New Zealand. I ask that you send your prayers and/or positive thoughts their way as well.

I didn't get here alone

2011-06-06T16:44:00.089-05:00

One of the positives about this whole experience, yes there are a few, are all the new friendships I've made during this journey. There is Jason, who because of someone wearing one of our golf hats, contacted me about his 'Warrior Combines' event. Although we've only known each other for a little over a year, I feel as if I've known him all my life. There are also a number of online friends that I have not had the opportunity to meet in person, but I know they are as close as the keyboard, of if needed, just a phone call away.

Another relatively new friendship that I am blessed with is with a fellow PC survivor named John. John is down to earth, honest, funny and just an all around good guy. He is a local news anchor here in KC. He provides me with inspiriation, as well as confidence to beat this menacing disease. The background on how we met and the story of our friendship was recently captured in a magazine article in a local publication "435 South". http://www.flhw.org/in-the-press/40-print/113-qthe-buddy-systemq.html. The writer did a great job of capturing our stories and promoting our message of the importance to go get tested.

Here is one of the pictures that didn't make the cut... I like it better than the one they did use!

My relationship with Jason, John, and so many other friends, both new and old, that I've shared my journey with over these past six years, reminds me of the Kenny Chesney song, 'I didn't get here alone':

I didn't get here alone
That road's just too rough and long
I might be the one the spotlight's on
But, I didn't get here alone
Yeah, I know I didn't get here alone

Hit me with your best shot.

2011-06-04T08:42:00.002-05:00

On the Thursday (May 19th) before my last trip to Atlanta, and vacation in Florida, I had my monthly appointment with my local Oncologist.

My PSA was 383, UP considerably from April. This was followed by a PSA in Atlanta that was up considerably as well (I’ll post historic numbers in a later entry).

This was not the news we were looking for and in all likelihood means Zytiga (Abiraterone) is not working. Though the Oncologist's office in Atlanta was able to get me transitioned from the trial to receiving the drug via prescription, it was a poor consolation prize. In order to close out the trial I will have to return to Atlanta one more time in mid-June and because I had already purchased the tickets this is no real burden.

What lies ahead is either another clinical trial or chemotherapy. Having been through chemo before this does not scare me since I tolerated it so well. What does concern me is the fact I did not have very good results from chemo back in 2008. The clinical trial would require considerable travel to Boston; every three weeks for the first 5 treatments and then every 6 weeks. While I was frolicking in the sun last week, Mary spoke with the study nurse and now we are waiting for a call back to proceed with the process of qualifying for the trial. The drug, XL 184 (targets the cancer tumors in the bone) has shown unprecedented results in previous trials and I pray that I can get into the trial as soon as possible.

On another note, the Prostate Cancer community lost another of our brethren last week when Walt, a gentleman from Alabama passed away. I didn’t know him well, although we did exchange several emails from time to time. I am saddened and pray for his wife and family.

I dedicate this prayer to Walt and his family....

Hail Mary, full of grace, the Lord is with thee; blessed art thou amongst 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

A voice from the past

2011-06-02T13:24:00.000-05:00

Back in 2008 we lost a member of the PCa community, Rick S from Houston. I wrote about it here.

Last week I received a message, via the FLHW Facebook page (click here). Though her name was not immediately familiar, after I watched her video, it all became clear. The video is on Facebook and therefore requires you to have a Facebook account to view it. I am trying to find a copy on YouTube and will add it to this post if I am able to locate it. Video on Facebook

It is a wonderful video and a tribute to a man I only briefly knew, but one who was taken too early.
Thank you Stacey. Your message and video touched me at a time I needed a good swift kick in the 'Faith'!

.... for a reason.

2011-06-01T13:58:00.000-05:00

Ever since I've known Mary (25+ years) she always has used the expression, "Everything happens for a reason".

While we were at the beach we spent a lot of time looking for sea shells. One afternoon Brad walked up to the north end of Anna Maria Island and while looking for shells he lost his blue silicon FLHW bracelet.

Then, on Tuesday while we were at Busch Gardens I received the following email:

As I was strolling along the beach at sunrise this morning on the north end of Anna Maria Island in Florida...I noticed a blue bracelet at the edge of the sea...just sitting there mixed in with all the beautiful shell shades....so I picked it up and read Faith Love Hope Win www.flhw.org.

Upon returning home I went to your website and I am still dazed and amazed at what I found. My husband passed to heaven 20 years ago...he was 42...our daughters were 5 and 8 at the time....he had prostate cancer. Not quite sure yet what his message is to me here... just thought I would share this with you. In light, LM

I hope your reaction was like mine. WOW! A coincidence? Perhaps it was, but I believe it was something more. For her? For me? I'm not sure and I may never figure it out. Anyone could have found the bracelet, but it ends up in her hands and with her story it had to happen for a reason.

I met her on the beach one morning and we walked (a long way!) and talked, and talked and talked. She told me about her husband and daughters and I told her about Mary and Brad. It was probably the fastest 90 minutes I have experienced in a long time. The discussion was fascinating, enlightening and touching.

Reflecting a few days later I am left with the thought of how much she still misses him twenty years later. I was also left with the thought that perhaps I had just met Mary, twenty years from now?

AMI - 5.21-5.28

2011-05-30T14:59:00.000-05:00

After Brad and I spent the night in Atlanta we boarded a plane on Saturday morning. Instead of heading back to KC however, we continued further south to Tampa where we met my dad and brother Dan.

Brad always teases me about renting a 'cool' car versus a 'dad' car. The rental was supposed to be a Taurus or similar car but it didn't take much arm twisting on the part of the man at the rental counter to upgrade us to a Chrysler 300. This is currently one of Brad's favorite cars so when I pulled up outside the baggage area in the red 300 I thought his jaw was going to hit the ground.

The weather in Anna Maria Island, FL was perfect all day, everyday. No clouds, 85 degrees and a gentle breeze. We spent each morning by the pool and afternoon at the beach. The only exception was Tuesday when Brad, Dan and I went to Busch Gardens to ride roller coasters.

Each night we ate fresh seafood, key lime pie and basically just chilled out. It was fun, relaxing and just what the doctor ordered, so to speak. There are a few more observations and incidents to report, but that will be part of my next update. There is also a medical update, but that too will have to wait for now.

Your co-pilot on this flight will be...

2011-05-24T11:24:00.001-05:00

Friday Brad made the marathon trip with me to Atlanta. I figured that since he is now officially graduated from 8th Grade, as of Thursday night, he has a little more time on his hands.

Instead of the usual marathon, I thought I'd make it a little more special for him so we stayed the night in Atlanta. Everything else was the same; the early morning flight, the MARTA, the Zip Car Prius, the doctor appointment, etc. I did rent the car for an extra hour so we wouldn't be so rushed to return the car and get to the hotel.

We laughed, we ate, we hit a few Starbucks, we swam at the hotel, we enjoyed the beautiful Atlanta Spring weather, we stayed up late and watched movies and woke up totally exhausted. My kind of get away!

There was more... but you'll have to come back for that part of the story!

My friend MP

2011-05-20T22:40:00.001-05:00

I have a fellow PC brother ‘MP” and earlier this month he sent an email to myself and a few others. In his message he thanked us for our friendship and support and letting us know he has decided to fore go any additional treatments. Though I don’t know him well it still came as a punch in the gut. He mentioned this when we talked on the phone a few weeks ago, so I was not completely surprised however, reading his words crippled me emotionally. I sat on the email until today and then I replied with the following. I wish I knew what else to say……

This email has sat in my inbox for 11 days now.

I look at it every day and wonder "what the heck do I say?"

Today I guess I stopped wondering and decided to act.

We don't know each other in the formal sense of the word, but when I called you on the phone a few weeks ago, I immediately realized how well we really did know each other.

What others don't understand, those living without terminal cancer, is how at ease some of us, perhaps most us become with what is to come. Our conversation and your email immediately confirmed you have truly accepted your fate. As strong as I may appear, I'm not completely with you. I accept the eventual outcome of this journey, I'm just not ready for the ride to be over!

I hope you and your family are able to enjoy to the fullest every second of every day ahead of you. Laugh, cry and generally just enjoy this beautiful thing we call life!

I feel blessed to know you and wish you the peace and grace of God or whomever you look to for spiritual guidance.

2011 Prostate Cancer Doubles Shootout

2011-05-17T20:19:00.000-05:00

Last Saturday 87 disc golfers competed in the 4^th 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

2011-05-13T13:50:00.003-05:00

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 3^rd 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 4^th 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!

Are you kidding me?

2011-05-05T07:00:00.003-05:00

I am always reluctant to celebrate good news too soon after hearing it. There is usually a 'but' attached to its arrival.

In this case it was last week’s announcement of the FDA approval of Abiraterone (the clinical trial medication I am currently taking). Once the drug received the official approval, all work on opening up additional trial sites ends and the focus for the drug manufacturer becomes the launch of the product. While this makes sense from a business perspective, what this means for little old me is that the University of Kansas Cancer Center drug will not be an approved trial site. It also means I will be returning to Atlanta monthly until my insurance company begins approving the use of the drug for its customers.

Just another case of really, really bad timing and that is the positive spin on what just happened. Actually, I remain thankful that I am receiving the medication in the first place and am confident that eventually it will all work out.

So it’s hello again Atlanta! Welcome me back MARTA train and to the cute little red Prius Zip Car at the Arts Center, you are on notice - I'll be back for you a few more times.

I'm not even going to predict if late May will be my last trip, because it will likely be June, July or God only knows.

Exposed once again

2011-05-04T14:26:00.001-05:00

Tuesday I had the pleasure of speaking to a large group of pharmaceutical employees. I traveled to Newark on Monday and Tuesday morning at 11:30 I exposed my heart and soul, the good, the bad, the ups and the downs of this journey. I really missed having Mary there this time. She is my rock.

The audience was warm and receptive. I hope that it was well received. I appreciate these opportunities, I enjoy sharing my story, but even more, I enjoy educating people about the disease. I look at it as one small victory at a time. If just one or two people leave that meeting and either get checked or encourage a loved one to be checked, it was well worth my time I would consider it a success. If not that, perhaps someone heard me when I encouraged the audience to eat better and exercise more and to not wait until something happens to make a change. I guess I’ll never truly know, I always leave these events feeling hopeful.

I met several really wonderful people again and I even discussed disc golf with a few people before lunch. Seems I should have brought a few discs and played a course at Rutgers University. Maybe another time!

As I mentioned before, this month is very hectic, so this is all I have time for now.

Guess who's at it again?

2011-05-01T20:57:00.001-05:00

Tomorrow I'm off to Newark, NJ where I will have the privilege of sharing my story once again. I will be speaking in front of several hundred marketing and support employees for a large pharmaceutical company. It is an honor to share my time with them and to provide a brief glimpse of prostate cancer from the patient's view. I will basically be repeating my presentation from March, and sharing my six year journey with prostate cancer. http://prostatecancerat42.blogspot.com/2011/03/big-speach.html

It's not one-hundred percent serious. I try to work in a little humor, as to not completely depress the crowd after 30 minutes. As I was preparing my notes I came across the slide where I explain that although I am honored to be there, I am not standing up there alone, but rather representing all the other men fighting the disease. I list the names of many of the guys I stay in touch with on line and then I show a list of five men whom we've lost over the years.

What stopped me was the fact that I need to add two names to the list. One was the father of a man who resides here in Kansas City. The other man's daughter had reached out to me years ago when he was first diagnosed. I was quite saddened last week when I received emails from both letting me know their fathers had passed.

This is the truly sad part of this disease, when good men die. And now I find myself speechless. I pray this doesn't happen on Tuesday morning. I will try my best to maintain my composure as I share my story, but there are times like this when I am reminded how much I hate this diesease!

It's raining good news!

2011-04-28T15:05:00.000-05:00

http://www.prnewswire.com/news-releases/fda-approves-zytiga-for-late-stage-prostate-cancer-120881469.html

This was just announced! Great news!

No immediate impact to me and the trial since JnJ will continue the trial until this works it's way through all the Government and health insurers.

Light the Whitehouse Blue

2011-04-28T04:52:00.001-05:00

A few weeks ago I added a link on the right side of my blog, you may have noticed the 'Light the Whitehouse Blue" link.

This is a a wonderful effort and attempt to get the President to 'Light the Whitehouse Blue' during September as it is during other months for other cancers. The link to sign the petition is at: http://lightthewhitehouseblue.org/

If you have a minute click on the link to help support this effort, seriously it will take less than a minute!

When down is up...

2011-04-26T14:38:00.000-05:00

Since January, when I started my current treatment, I have had my PSA checked by two labs, four days apart. The first test is done in Atlanta as part of the clinical trial while the second is done in Kansas City as part of my regular monthly Oncologist appointment. The difference in the test results are expected, one of the first things we learned after being diagnosed was to always use the same lab. Though we have changed labs a few times (due to changing doctors) we have always focused on the trend and not individual test scores.

In my last post I reported that though my test in Atlanta showed a slowing of the trend, my PSA was up again. Today I am here to report that my number from the lab in Kansas City is actually DOWN 17% to 336! Can I get a ‘HELL YES’!

Here are the raw numbers since January and a pretty chart of my PSA over the last few years.

	KC	ATL
01/31/11	349	200	01/25/11
02/28/11	356	250	02/24/11
03/28/11	403	293	03/24/11
04/25/11	336	323	04/21/11

A small victory but still good news! I'll be real happy when trend line is going down. I had a statistics teacher who use to say 'Two data points make a trendline', now I just have to wait 672 hours for the results of my next PSA test!

Up, however

2011-04-25T10:01:00.000-05:00

I received a call from Atlanta Friday morning with my PSA results from Thursday. Below are the four results I received from my trips to the doctor in Atlanta. For the record, January 27th was the day I started the trial.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Date          PSA        Rate of Increase

27-Jan      200
24-Feb     250          20%
24-Mar    293          15%
21-Apr    328           11%
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At first blush, yes my number is up again, but the good news is the rate of increase continues to drop.
Additionally, when I talked with Dr. A Thursday he indicated that he has had several patients that he took off the trial after two to three months. Unlike my case, these men continued to see a rapid rise in PSA and, more importantly, a progression in bone pain. Although my number is up, the rate is slowing and the number of and severity of the aches and pains I experience are down from the previous visit.

Today I am seeing my local Oncologist. The bad news is that KUCC is not yet able to accept patients for the trial. I am less hopeful that they will be ready by May 20th, the date of my next check-up. I have made a few inquiries through some connections and should have a better idea by tomorrow.

In the past few days I received two separate emails with sad news. We lost two more men to this dreaded disease. One in his late 60's the other in his late 70's. Some what older than me, but still hard on both families.
In one case the man's daughter said that though her dad was not much for computers, he always asked 'how's the young guy with the blog doing?' From time to time she would update him on my progress and she indicated in her message he found it inspiring. That makes me feel good, I just wish the entire circumstance was different.

How many more have to lose their battle before we make a break though?

How many? A lot when you count them all.

2011-04-20T15:52:00.000-05:00

As much as I try there are times in this journey, like right now, that I cannot help but spend a lot of time wondering and worrying. Overall I remain positive, but it's only natural that I 'suppose' in my thoughts. The good news is starting May 1st my life is going to get rather busy (busier than it currently is, if that is possible!) and that will provide less free time for my mind to wander.

I have another speech early in the month, two events for the foundation, one on the 6th and the other on the 14^th, Brad has confirmation, graduation and then we are taking a trip to Florida. June will include Mary having a medical procedure of her own followed by substantial recovery. In July I will be going to Chicago to see U2 with a few friends, followed by my 30th High School Reunion in St. Louis. At the end of the month we are going to the Kenny Chesney concert with one of my favorites, the Zac Brown Band. For the latter event I will finally be meeting a fellow PCa survivor and dear friend Tony. After all of this, Brad will be starting high school in August and well, life will go on. I’m tired just reading this list!

In this midst of all this hustle and bustle, I really need my trial medication to kick in. My PSA needs to stabilize at a minimum and actually decrease significantly. If not, what lies ahead is some combination of Provenge, chemo, and perhaps other clinical trial drugs. Some MAY be more promising than others, but it is the current medication we are counting on for results.

I'm going to do my best to focus on the list above, yard work and various home repair projects we are in the midst of currently. There are times when I am real good at it, there are others like now when I struggle. In the end, things could be far worse for me, so I stop, say a prayer and count the many blessings in my life.

Tomorrow is what I really hope is my last trip to Atlanta. We are very happy with the medical staff in Atlanta, it is just that the logistics are time consuming, expensive and ultimately exhausting. My case will be transferred to my regular Oncologist locally at the KU Cancer Center. Additionally, per the trial protocal, my visits will become monthly instead of bi-monthly. Your prayers for a lower PSA, or at a minimum a stable PSA would be greatly appreciated.

The rebound

2011-04-17T21:33:00.001-05:00

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

2011-04-13T21:59:00.001-05:00

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

2011-04-06T20:37:00.001-05:00

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

2011-03-29T17:02:00.001-05:00

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

2011-03-24T15:31:00.002-05:00

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.

I'm tired

2011-03-24T00:41:00.000-05:00

I am fairly certain my friends, family, and those around me on a daily basis would attest to the fact that I’m not a complainer. I don’t dwell on my situation or current condition, nor do I focus on the negative side of a situation, but I have to say it at least once, I’m tired.

I’m tired of:

the little aches and pains.
taking all the medications.
worrying if the current treatment is working.
trying to live a normal life when my life is anything but normal.
worrying about the future, and for me that's like six months from now!
not playing disc golf.
the words 'Prostate' and 'Cancer'

For you regular readers you should recognize this as one of my moments. We now return to your regularly scheduled programming!

601

2011-03-23T20:21:00.001-05:00

This post marks quite a milestone, it's number 601! That's approximately one-hundred per year for the last six years! I never thought I'd have this much to say or share but I proved myself wrong.

Spring has arrived in Kansas City and that means rain. We received rain showers several times last week. More importantly the rain means we will also have beautiful spring mornings.

It was 52 degrees when the guys teed off at disc golf Sunday morning. I was the score keeper once again. Growing up in St. Louis I was familiar with large, planned urban parks (Forest Park). In Kansas City we have Swope Park. Like Forest Park it contains the Zoo, outdoor theater (Starlight), a golf course and in Kansas City's case, a beautiful disc golf course. Sunday morning, amongst other sightings and sounds we saw Missouri Blue birds and an eight point white-tailed deer. It pains me to be on injured reserve as I rest my hips for the time being, but the sights and sounds of nature, along with the time with friends makes up for my lack of participation.

It was close to 80 Sunday so I cleaned up various winter time debris in the garden, move some hostas and lilies and piddled around in the yard and enjoyed the beautiful weather.

Thursday it's time for another day trip to Atlanta, I can't wait to see how Spring has enveloped Hot-Atlanta!

Provenge Expansion

2011-03-17T10:42:00.019-05:00

Last year at this time I had the opportunity, along with 40 other prostate cancer advocates, to tour the Dendreon manufacturing facility in New Jersey. At the time the company was weeks away from FDA approval of Provenge and construction of the expanded facilities were in full swing. As I wrote at the time, it was very, very impressive.

Just last week they were finally granted FDA approval to begin using the expanded capacity, increasing from twelve to forty-eight stations.

[press release]

This is great news for many, many men throughout this country battling against the advanced stages of prostate cancer.

There are two other sites currently under construction, in Georgia and Southern California. Dendreon is pursuing approval for these two sites and hoping to bring them on line later this year.

A good day and great news for the PCa community!

....And finally.....Happy St. Patrick's Day!!!!!!!!

McCain Aiming to Eliminate Prostate Cancer Research

2011-03-16T16:25:00.002-05:00

I have always tried to avoid the politics of prostate cancer but in this case, it cannot be avoided.

Please go read the most recent copy of “Zero Hour”, the newsletter from zerocamcer.org

This are just a few excerpts:

The Congressionally Directed Medical Research Program is a central component of the war on cancer and has been responsible for helping to move nearly all prostate cancer drug advancements in the last five years.

If Senator John McCain, a war veteran, former POW and 3-time cancer survivor, gets his way, more than $300 million in medical research will be eliminated from the Defense Appropriations bill to help pay for the Iraqi police force.

Though I am a big proponent of smaller government and less spending, this is ridiculous.

Please go read the newsletter and if you agree, please act!

Monday's a pain but Thursday's a grind

2011-03-15T15:42:00.024-05:00

I made my third bi-weekly trip to Atlanta this past week. Although I’ve got the thirteen hour round trip down to a science, last night I realized how quickly it has become a real drag.

I’m getting quite a bit of reading done, and I sleep really well on Thursday nights after the trip .However, half way though the three month bi-weekly process, I’m ready for it to be over. It's very worth every trip if we see a reduction in my PSA and we are able to regain some control of the caner with the Abiraterone.

There is a rumor the same trial will open here in Kansas City, perhaps in April. That would be ideal since I have already booked the flight for the next three trips. I have held off the April 24^th trip because of this and because the airfare on that particular date is $300! The chances of the rate changing are slim, but you never know.

I saw blooming dogwoods while I was on the MARTA Thursday and that means one thing, Spring is here. My favorite time of the year! Ash Wednesday, Lent and soon Easter. Our hyacinth are peeking up and I really cannot wait to get outside and spend time in our yard.

Thursday’s grind will certainly get tougher over the next few weeks as the signs of Spring continue to increase.

Letting it all sink in...

2011-03-12T07:23:00.005-06:00

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

2011-03-09T15:23:00.001-06:00

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.

What would you do for a year?

2011-03-05T09:14:00.000-06:00

Dockers is currently running a contest that will pay the winner for a year to complete a project of their choice

or complete whatever they want.

I was limited to 400 characters, here is my entry:

As a young man of 42, in 2005 I was diagnosed with advanced prostate cancer. There are a limited number of treatments for advanced prostate cancer, and it is considered incurable. Winning would allow me to put everything aside for the next year and pursue my passion: Raising awareness for prostate cancer and raising money needed to find better treatments and a cure for advanced prostate cancer.

I got a very late start and voting ends on March 15^th.

The link to my entry is below, please go there and help me out by voting everyday!

(note; this might require Facebook, I’m not 100% sure?)

http://dockers.contextoptional.com/entries/27741#top

The Big Speech

2011-03-02T11:25:00.001-06:00

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.

I've been here before

2011-02-28T11:09:00.000-06:00

This morning I'm sitting in the waiting room at the cancer center and it came upon me that I must have been here at least 100 times. Not at this particular facility, but over the past six years, I have sat in medical facility waiting rooms well over 100 times.

This observation came to me as I looked around and noticed the others, waiting themselves. Those with bandanas are obviously grizzled veterans like myself. Then I witness the groups of families. Maybe mom, dad and one of their older children. They pick up and read the pamphlets and tend to be a bit more talkative than those who've been here before.

Each of us in this waiting room are not only in a different stage of the journey, but we travel the road that is the journey differently. Just this morning I was reading yet another story about the link between red meat and cancer. As I observe fellow patients, I am certain many of them skipped over the pamphlet that promotes the important link between nutrition and cancer. My remark is not intended to be snide or disrespectful, I just find it difficult to imagine myself, in this battle, still eating and behaving as I did before cancer.

A good, snappy analogy eludes me this morning. I know I've spoke of this in previous posts, but it really gets to me. I just want to sit next to people and try to get through to them and try to convince them that it is in their best interest to follow a low fat diet.We have so little in our control, diet is one thing we can try to do to help ourselves.

I pray that they eventually realize how important diet can be in fighting cancer. I know most won't change, and some simply just don't want to.
~~~~~~~~~~
In closing I should report that my Doc in Atlanta diagnosed my back as a muscle pull. It inially started a few days after I played disc golf (after a two month lay off). I followed that up by continuing working out each morning. Sometimes I can be a little stubborn. After not working out for almost a week and being extra careful, I'm happy to report I'm 48 hours without Advil and last night I slept better and without a heating pad for the first time in over a week. Thankfully, problem solved.

Hurt

2011-02-25T14:55:00.000-06:00

To someone who needs it:

When I see you like this,
I hurt so deep down inside.
It only gets worse,
when I consider that,
there is nothing I can do.

I can only hang out on the fringe,
witnessing your pain,
handcuffed to the reality
that is life.

This world is cruel,
and so are her inhabitants,
Gods creatures,
believers and hypocrits
all wrapped up in one being.

Trailblazing....

2011-02-23T20:35:00.000-06:00

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!)

Lucky #7, again

2011-02-17T09:52:00.000-06:00

Last Friday, February 11^th marked the six year anniversary of my diagnosis. A few of us gathered at a local watering hole for a few beers and some lively conversation. I wasn’t up for anything big, and this was a big step from years past when I may have blogged about it or discussed the significance of the day with Mary.

I can’t imagine a day when we have a big party celebrating remission, a cure, etc. But I can imagine a ten year celebration. After all, I’m now practically a week into year seven!

There is so much going on right now. Work is keeping me busy. It’s that time of year when I put together the catalog for our annual church auction/fundraiser. I also am preparing for a speech the first week of March. I will share more about this event with you at a later date. I also have been asked to submit a short letter for inclusion in one of the PC advocacy group's annual report. We have an FLHW Board meeting this week and I also have a committee meeting for a different project at church. So I guess that answers the question that might have guided you to log in to my blog, ‘I wonder how David is doing?”!

My presentation is all but complete, I just need to practice. The draft of the letter is currently being reviewed and tweaked by editorial staff (Mary). Keeping busy benefits me in many ways, but the main one is to keep my mind off of the disease. I don't dwell on it often or for very long, and I appreciate the many distractions that I have throughout my day to avoid it from becoming a constant obsession.

So in conclusion, as I begin year seven, I once again feel blessed and remain optimistic about the future.

Like a finely tuned Swiss watch

2011-02-10T19:05:00.001-06:00

4:30am wake up
5:01am showered, dressed and and out the door
5:43am arrive at KCI, terminal A
6:35am flight departs on time
9:22am arrive ATL Hartsfield
9:59am with large vanilla latte, board Marta red line
10:28am arrive at Arts Center Station
10:36am unlock the Zip Car
10:54am arrive at Oncologist's office (only 9 minutes late)
11:35am finish appt with medical staff and depart
11:41am finally get to have breakfast, coffee
12:22pm return Zip Car
12:26pm board Marta to airport
12:57pm arrive at Hartsfield
1:25pm Pass through TSA, no pat down required
3:45pm Return flight to KCI, on-time and with another open middle seat
6:02pm Back home, dinner with the family!

I can only hope that future trips go so well!

My Abby Road

2011-02-08T12:44:00.000-06:00

I was looking for this post a few weeks ago, when it became apparent that Abby (Abiraterone) would become my next treatemnet.

I'm not suggesting that I'm Kreskin or Nostradamus, but it is crazy how close I was with some of the things in this post from two and half years ago. Provenge, I was nearly right on the money, it was 19 months later.

October 17, 2008

http://prostatecancerat42.blogspot.com/2008/10/hope-in-future.html

The fruits of medical research are growing. Here we are in February 2011 and there are a number of promising treatments on the horizon. Most are still in trial stage, but things are a lot different than the picture this old post paints. More options means hope and that is a good thing.

On another note, the dead of winter has set in with a vengeance and I really look forward to Spring.

When you put it that way.....wow!

2011-02-05T15:33:00.000-06:00

On the prostate cancer message boards we often discuss the cost of treating prostate cancer. Last week I provided a summary on the 2010 costs for my treatment. Below you will find the summary, these are 100% prostate cancer related as I am otherwise healthy :-).

During the year I had two bone scans, a CT scan, a MRI, 14 radiation treatments, 13 Zometa and Lupron treatments. I was on DES (not included in this cost) I have been on Lovenox since mid-October.
Billed Amount $117,005.53
Paid by Plan $46,156.01
Patient Responsibility $1,684.97

Billed Amount = amount medical provider billed insurer
Paid by Plan = amount insurer paid medical provider

For a general idea of what this has cost so far, take these numbers and multiply times six.

All I can do is say a little prayer for the fact I have great health insurance!

It's Blog-aversary VI

2011-02-02T19:37:00.001-06:00

February 2, 2005

Entry #1 - The start of the end?

(This is just a portion of my first entry)

So here I am, a 42 year old, white male and tomorrow I am having a biopsy to determine if the problems I am experiencing are ultimately diagnosed as Prostate Cancer. Grim thought indeed.

…. I am fighting to remain positive. I pray a lot more than I ever have.

I worry most about my wife and young son and how they would go on?.... But I worry about them both emotionally and psychologically. I can't imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have......

February 2, 2011

Entry #589 – It’s Blog-aversary VI

Now I find myself here, an outlier, way down the right side of the bell curve. Wondering, worrying, still trying to find fresh perspectives to share with you.

I try to keep the focus on what I am feeling and thinking versus what I am doing. For example; when I share that I had/have treatment I think readers appreciate it more when I share that it worries me, that I am hurting and what I’m thinking about. Anyone can post the mechanics of living with this or any disease, but I have always tried to reach deeper, beyond the scans, tests and needles. I really try to provide something unique that other survivors can use. Maybe they learn something and gain just a little insight in order to deal with what may lie ahead for them.

As I mentioned to a fellow PCa survivor earlier today, “It’s a badge that most of us would relinquish if we had the option. We don’t have that choice so some of us share it hoping to provide just a little light in an otherwise dark cancerous world.”

Worried? Not enough to stop the getaway

2011-01-31T18:00:00.000-06:00

When will I stop worrying? The answer is likely, never.

It is true, I have started the next step in the journey, but the way that this whole process evolves in my mind is a little tricky. As I go through this post I hope I don't leave you with the impression I am not grateful or that in any way I am not thankful for the opportunity that this new drug provides.

The next, and first measurement will be a PSA blood test in four weeks. In between I will have my potassium level and other markers measured but the key marker will be the stabilization of my PSA, and eventually the lowering of the PSA. As long as this continues every four weeks I will remain on Abiraterone indefinitely.

You may be saying, great that will make you so happy. Well on one hand yes it will, but on the other I will return to living my life in 28 day cycles. I would give practically anything to have 6 weeks, two months or more without having to worry about this disease. As I mentioned in my last, it's an emotional grind and yes, I should be cherishing this opportunity but not yet. I pray that it comes in time.

I was able to put it aside from time to time this past weekend. After spending Thursday night back in Kansas City I left for Los Angeles on Friday to help a friend with some business. There was a convention in LA that I agreed to help him with last minute.

We arrived on Friday around 2:00 pm and were pleased to see a convertible Mustang waiting at Avis. Though it was the color a blue Smurph would have envied, we didn't express any complaints. Our first appointment was about an hour south of LA so with the top down and the temperature a perfect 72, we hit 405 south.

It was around 4pm when we got back on the highway to LA and we began discussing how much we'd be willing to pay for Lakers tickets that night.We got a real bargain on StubHub, better yet, he had a connection that got us into the club level for the game. The Lakers ended up losing but it was a fun time and a good experience.

We spent Satruday at the trade show, hit Tommy's Burgers (I passed on the burger), drove up and down Rodeo Dr. and watched 'Due Date' before calling it a night. Sunday we grabbed some breakfast, returned the car and returned to LAX. [side note: back and forth to Atlanta and LA in one week, no one at the TSA came close to patting me down and the security personnel were all pleasant.] We spent about an hour in the terminal brain storming ideas for business and then back to the cold midwest with new stories forecasting a blizzard in the coming week. for Kansas City. It was a nice distraction and freat way to end a very stressful and hectic week. J, I owe you big time!

Today I had my monthly Oncologist visit and I received the standard shot and infusion. My PSA spiked but it was a different lab than last week and I'm now five days into the treatment. It's too early to tell if anything had changed so I'm going to mentally discard today's reading. It's the test on the February 24th that will hopefully start to indicate how things are going. Dr. A in Atlanta did attempt to set our expectations by explaining that a patient does not typically see a positive response for a month or two. We will do our best to have patience.

Birthday presents

2011-01-28T12:21:00.001-06:00

On Tuesday Mary and I traveled to Atlanta. The purpose of this trip was to meet with a new doctor and be approved for a clinical trial that offers a drug that should help quell the beast. With the continued increase in my PSA, it was critical that we find a new treatment. The drug, Abiraterone, is on the verge of FDA approval.

Tuesday was unbelievably stressful and tiring. We had to get up at 4:45am in order to get ready and catch a 7am flight. The trip to Atlanta was non-eventful but when we landed it was raining. The rain continued all day and the gloominess hung over me like the large gray clouds that blocked the view of the Atlanta skyline. After getting a rental car and driving to the Buckhead area, we only had time for a quick lunch before heading over to the doctor's office.

Somehow our luck continues when it comes to finding pleasant, professional and accommodating medical support. Dr. A's staff was fantastic. We spent 30 minutes or so with the doctor followed by a trip to the hospital for tests. Dr. A has been involved with this specific drug throughout all stages of the clinical trial. He has seen excellent results from the majority of the men on the trial and very few complications. The primary side effects noted are low potassium and leg cramps. In order to monitor my health through this trial, I will be returning for blood tests and visits with the doctor every two weeks for the first 3 months and then once a month after that.
The remainder of Tuesday afternoon was spent at the hospital where I had both and an EKG and an echocardiogram. I wasn't familiar with the latter, but learned it is basically a sonogram of your heart. I was able to view the monitor and I must say it was pretty exciting to watch my heart valves open and close! At one point I could see all four chambers at once, quite amazing.

By the time we checked into the hotel and got to our room it was nearly 5pm. We took a few minutes to drop our things and headed off to dinner. Wouldn't you know it, we found one of our favorites, Houston's right down the road. We had a nice meal but the craziness of all the travel and the stress of waiting another 36 hours had caught up to me, I was exhausted.

We spent Wednesday working from the hotel, working out and swimming and then had dinner at a restaurant I had discovered a few years ago when I had to travel to Orlando on business, Seasons 52. They have a great grilled scallop dish that we both enjoyed and we were back in our room by 8:00pm.

Neither of us slept particularly well on Tuesday and Wednesday it was worse. Tossing and turning continued and we threw in the towel and got up a little after 6am. We arrived at the doctor at 9:30 and they were once again the epitome of efficiency. By 10am I had the trial drug in hand and was taking my first dose. A quick stop at their pharmacy for the Prednisone and we were on our way back to the airport.

I really despise airlines when they charge you to change flight. It cost $50 each for us to walk up to a kiosk, scan our boarding passes and use the on screen menu to change from the 4:10 to the 12:50 flight. $100 and not a single second of human intervention! Complaints aside, it was well worth it to get home three hours earlier on my birthday.

Perhaps I failed to mention that previously...yesterday I turned 48. As I look at those words on the screen in front of me I am taken back for a number of reasons. First, my how life flies by, 48! I also look at the header of this blog and think about all that has happened in the last 6 years. The highs, the lows, the ups, and the downs. The new friends I've made and cherish, the friends I made and lost, and those this disease has allowed me to reconnect with after so long. What a life I have led in such a short time.

Ahead lies more than a 49th, 50th and more. Birthdays are the milestones but everything that happens the other 364 days are a blessing. Take some time to slow down and enjoy them because once they are gone, you can't get them back.

At the end of the day I pray that this new drug is successful in taming my disease for months and perhaps years to come. I would like nothing more than to look forward to 12 years from now and be able to post, "Yesterday was my 60th birthday and Mary and I stayed at home, had a nice quiet dinner and shared a cupcake with one candle on it!"

Dealing with the grind

2011-01-24T21:00:00.005-06:00

A friend asked the other day if Mary and I talk about what’s going on a lot. I explained that at home we are very open with Brad and that her and I talk as appointments near and as decisions need to be made, but we don’t talk about ‘what if’ much anymore.

As you can probably imagine that topic usually leads to tears. I think the last time I had a real good cry about this might have been three or four years ago. I'm not afraid to have the discussion and as a matter of fact a good cry is very cleansing. We just choose to focus our energy on beating the disease and don't dwell on 'what if'.

It’s not that we live in denial. We have just learned to live in the now and we always try to remain positive. Thinking about death, and the end, and what happens when we run out of options is just not in our repertoire. There are far too many options that still lie ahead of us. None of them offer a cure, but they each offer time. Add them all up and who really know how long this can go on?

I'd be leaving something out if I didn't say that it all weighs heavily on my mind. As I mentioned in my last entry, we have a new normal. I don't care for it much at times, but for the most part, life goes on in some 'normal' way.

This is a big week in this journey. It reminds me somewhat of the days and weeks that led up to chemotherapy back in 2008. I am a bit nervous, certainly anxious, and will be very happy when this week reaches a conclusion.

Extra prayers to Brian and Kim in New Zealand tonight. Brian is in a similar stage as me and had to be taken to the hospital by ambulance. His pain had reached a point that he couldn't drive himself.
This prayer is dedicated to Brian:

Prayer to Saint Peregrine ~ Patron Saint to cancer patients

O great St. Peregrine,
you have been called "The Mighty,"
"The Wonder-Worker,"
because of the numerous miracles
which you have obtained from God
for those who have had recourse to you.

For so many years
you bore in your own flesh
this cancerous disease
that destroys the very fiber of our being,
and who had recourse
to the source of all grace
when the power of man could do no more.

You were favored with the vision of Jesus
coming down from His Cross
to heal your affliction.

Ask of God and Our Lady,
the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession,
we shall sing to God,
now and for all eternity,
a song of gratitude
for His great goodness and mercy.
Amen.

My blessings are always counted

2011-01-21T21:41:00.001-06:00

Oh, what a lucky man he ~~was~~ is.
That’s a line from an old 1970’s rock group, Emerson, Lake and Palmer.
It just reminds me of how lucky and blessed I am.

As next week nears and we take the next major step in this journey I find myself unbelievably thankful.
My life is surrounded by a compassionate family, wonderful friends, and the support of my boss, insurance
company and more. (the latter might seem strange to include but as opposed to some horror stories,
my insurance experience has been very smooth).

The past six years have flown by. That might be hard to imagine, but it’s true. At the same time, life has changed so much that I forgot what it was like before, when things were"normal". Normal left us so long ago, but that’s not a bad thing. We have settled into this medical circus and it has become our normal. Believe it or not, I’m OK with this.

Finally, please send your positive thoughts and prayers to all my PCa brethren out there....

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 the underdog, and I'm still here

2011-01-18T20:52:00.000-06:00

On one of my recent music journeys I was really touched by this song by the band Spoon.

It's the tempo and the music, not the lyrics.

I don't fear the underdog, I AM the underdog!

~~~~~~~~~~~

It's a good news, bad news, more news story

2011-01-12T22:01:00.000-06:00

Good news I got into the Abiraterone clinical trial (assuming my EKG is normal). Also, due to an awesome clinical trial manager, the plan is to meet with the doctor, have blood work done, meet with the clinical trial nurse and have the EKG on day one. Then two days later, assuming all tests are within range, I'll meet with the doctor and begin taking the medication. This will alleviate a return trip 4 or 5 days later.

The bad news is I am going to be traveling to Atlanta on a bi-weekly basis until a site closer to home opens up.
There are rumors of a location in Omaha (3 hour drive) or even at KU Cancer Center opening soon, but based on experience, 'soon' could range from from forever to never. I will remain positive, as always.

The more news portion is that after the initial trip I can fly back and forth to Atlanta on the same day and direct from KC! I'll scout it out but from the Google map I might be able to take the MARTA to within a mile or two of the doctor's office, catch a cab, have the appointment and then do it all in reverse. So in one day I will leave Kansas City bright and early and be back home by 10pm. So the logistics may be a bit of a challenge, but most important, we are hopeful that I will be able to receive the treatment that will get the cancer under control and my PSA will take a turn in the right direction.

Without details

2011-01-10T22:29:00.001-06:00

No details yet but as of now I am scheduled to meet with the doctor in Atlanta on the 25th. I have asked to move that up, but the trial nurse was out of the office on Friday and snowed in today due to a storm in Atlanta.

Last Tuesday and Wednesday I was experiencing a lot of fatigue and some mild discomfort/pain. I hate to even use the word pain, but never the less, in both cases two Advil took care of things for 24 hours. Since Thursday I haven't had to take anything.

I should know more tomorrow and will post updates after I get all details.