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A glimpse in the rear view

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I’m writing this at 33,000 feet on my mobile phone, returning to Kansas City from a business trip to Philadelphia.

This Saturday is a big day, it marks two and a half years or thirty months post diagnosis! As my friend David likes to say ‘that’s a big damn deal!!’

Being on a plane and without internet access I am not sure where this places me in relation to the ‘average’ man diagnosed with metastatic or advanced PCa? Frankley, we never really cared.

From that dreaded day in 2005 in Dr. D’s office we have never approached this like my case was average.

Sometimes, like when Lupron/Casodex only worked for less than a year, we were on the wrong side of average. However with my current regemine, we’re still seeing results three times longer than average. How does the saying go? ‘There are lies, damn lies and then there are statistics? Or something like that……

Each month, each step of this journey has been a learning experience. I have met some absolutely wonderful people. I have grown closer to those around me (both family and friends), closer to God and I have changed, wow have I changed!

Just go re-read entry #1 (February 2, 2005). Not only is my tone different, my attitude, my outlook and more have changed as well. Yes it’s true I know so much more about PCa now than I did back then, but I have to honestly admit that I am more positive tonight than I have been
in months.

Cure? I said I was feeling positive not that I was feeling crazy! That being said, at 30 months I’m feeling like 60 months may just be a start……you never know?

Recognition, while appreciated, that’s not the point

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I received notification the other day that my blog, “the Big C” had won an award. The press release is here.

I appreciate this although it’s not really the point. The purpose of this blog is to share my experience in order to keep my family and friends up to date and more importantly, to share my experience, thoughts, and perspectives with someone else that might be going through their own battle with prostate cancer.

There is another movement under way, started by one of the moderators of the discussion boards I monitor, to get Oprah to do a show on prostate cancer. We are trying to send as many requests as possible in order to get the attention of the show’s producers. If you want to help, click here and fill out the application. It will only take a few minutes, and who knows, maybe if enough folks submit the idea, it will make a difference!

That’s the Power of….?

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In the 1980’s, Huey Lewis thought it was ‘Love’, I might have to beg to differ with him after leaving the doctor this morning.
Yes, I do have an updated PSA number but you’ll have to let me blather on in my usual way before I reveal the results.

– The anniversary dinner Friday night was great. I give the Blue Koi’s new location two big thumbs up!
– I played disc golf Saturday, not very well, but I had my moments; thanks Rich, Rob, Erik and Mio!!

– While I am not a big Huey Lewis fan, my subconscious is at work; Mary, Brad and I watched ‘Back to the Future’, Saturday night. Brad had never seen it, it was a good family event! This led to the title of this blog. I think the song should be “That’s the Power of Faith”. I’ve already been told of people praying in the shower (twice) and at the gym. I spent a good deal of time at Mass on Saturday doing my part.
I was also pleasantly surprised when one on the songs was “The Servant Song”. At some point after diagnosis I heard this at Mass and it stuck with me. Saturday the vocalist happened to be our best vocalist and my friend Dana. Of course I cried, I love her voice. Here are the lyrics I found via Google.
So back to the topic at hand. In anticipation of my test results, Mary and I spent considerable time last night researching next steps. Additional drugs, chemo, clinical trials, estrogen, etc. Mary put together a great matrix that identified our options along with the positives and negatives of each treatment, location of the trials, and more. This was shared with Dr. H and was very well received. With all of this swimming through our heads, we slept very little. I think we slept for an hour between 2:30 and 6:00am, when I rose to workout.
I’ll spare you the details since I’ve drug this out long enough, my PSA was: 16.96
I’m not sure when I was this happy, relieved and thankful all at the same time! We bought ourselves, in all likelihood, another ninety days!!!
Mary suspects that the lethargy I encountered while healing my leg might have had something to do with the rise in my numbers. I don’t care what the reason was, I love the results!!!

Historic numbers:
Date: PSA:
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)

[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]

9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66
(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45
1/27/06 0.46
12/28/05 1.85

[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.80
8/11/05 0.35
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)
Original Gleason scores (7/8)
Pre-treatment test: 2/?/05 219
Original test: 12/?/04 189

Sweet little Sixteen

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No, not the old chuck Berry song.

Today is the day, sixteen years ago that I married my best friend, my one and only, my soul mate.

There are many things she has done for me over the years, far to many to list here. She is always there, by my side with a word of encouragement, a silent squeeze of the hand, a gentle kiss.

I don’t even want to imagine a world without her? It would make George Bailey’s world look like a children’s tale.

And so tonight, we will slip out for dinner for two. Nothing fancy, just a place we enjoy immensely; The Blue Koi.

If history repeats itself, we’ll be asleep before midnight, but content and happy as you can only imagine.

A big deal

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Today I am having blood drawn for another PSA test. My appointment with Dr. H is not until Monday, but Mary and I decided to have this done today, so when we meet with Dr. H on Monday we will already know the results.

Yes, I am a little apprehensive.

Sonny Days

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We spent the last week at the Lake of the Ozarks. The weather was great, not too hot. The week was filled with activities!!!


One of our favorite things to do at the lake is just float. We all grab a raft and just float in the cove for hours and hours. It’s unbelievably relaxing.

We also hung out at the pool for hours, ate well, BBQ’d and had a number of ‘adventures’!

One day the boys went trout fishing at Bennett Springs State Park. We didn’t do to well but caught enough for dinner. We had three on the stringer when we began to pack up and make the 50 minute drive back to the condo. Brad and I were about to pick up the last pole and our tackle box when an elderly lady asked Brad “Do you want to land her?” I looked and her fishing pole was bent so it was obvious she had a fish on it. Brad said sure and I grabbed her net to help capture the rainbow trout. After I had the fish in the net she asked me if I wanted it. It was perfect, we had four for dinner and Brad could say he caught one! Here’s a picture of me cleaning the catch!

Another day was spent at Big Surf Water Park. We’ve been going to my dad’s place at the Lake for twenty years now, Big Surf has been open for the better part of that time and I have never been. The kids, both big and little all had a great time.

My brother in law also turned forty while we were there. Amongst other events, we stopped into one of our favorite local establishments; Woody’s. It’s a real dive, with cheap Busch Beer (a St. Louis thing) and free shuffleboard. Here’s a picture of the birthday boy and his friend Jose!

I have a second week of vacation scheduled this week. I discovered last year how increably relaxing two back to back weeks can be. The second week will include a few days with family, chores and more ‘Brad-Dad time’. A few rounds of golf, the pool, a movie or two.

My sister and nephew came in from Ohio. They drove over from St. Louis with my younger brother Dan. We mostly just hung out, went to the pool and ate way too much food!

Thursday night Brad is throwing out the first pitch at the Kansas City T-Bones game. The T-Bones are our minor league baseball team. Mary and I bought this at a cancer charity event last year. He’s a little nervous but we practiced today and I’m confident he’ll throw a real nice strike!

The best part of the both weeks was the amount of time I got to spend with Brad. To see his face change from disappointment to joy when laniding the fish was priceless!!!!

One for the kid…..

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I have never told anyone besides Mary, but for the last eight years I have kept a journal for Brad.  I write a brief entry each month about things going on in our family.  The good, the bad and the ugly.  It has grown to over thirty-three single spaced pages.  I may amount to nothing, but I really think in the years ahead Brad will have a glimpse into who I was, what I thought.  I share a lot here, obviously I share a lot more with him. 

 

Here’s an excerpt from this months entry I wrote earlier today.

Summer is almost over, again. It sure flies by. School will start on August 22nd and you will be in 5th Grade already. Wow how time is flying.  Brad I love you and mom so much. I get sad at times when I think about the possibility of my demise? I am hopeful and pray daily that things will go on for a long time. However, as a realist I realize that they may not. I worry about you going through your teen years without a dad. I worry about her without me…..I start to cry. 

 

Life, at times like these, really sucks.  My advice to you is instead of dwelling in the negative, the sad, you have to focus on the good things in life. You need to think about what you do have, and what lies ahead of you. Don’t focus on what you lost or are without.  God challenges us everyday. He challenges us to do the right thing, to make the right decision. Sometimes we don’t. But he is forgiving and I think he expects us to learn from those mistakes.

 

As you read this, you may be without me, I am not sure how and when I will ever share this with you? And so my message today is be strong. Take the time to think, morn, make tough decisions but be “mind strong”. What I mean is this; don’t feel sorry for yourself, don’t have regrets don’t be a worry wart. We could all spend a life time analyzing our lives, wondering ‘what if I had done this or that differently” or what if this or that happens to me”. Think about things, but make a decision and move on. There is always someone out there with a worse story. Yes, what happened to me (and subsequently you and mom) really, really is a travesty but look at the good that came from it, look at the positive impact we and the foundation had on those close to us and more importantly complete and total strangers.

Don’t pull my leg and a flashback

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I was released from the Orthopedic doctor yesterday and now I have a few less appointments to deal with each month! She said that I can go ahead and start putting more and more stress on my leg.  I rode our stationary bike for five minutes this morning with no pain, no issues.  Over the next few weeks I’ll add jump rope and leg exercises that involve weights.  She just suggested I work my way back to my previous levels over a few weeks.
 
I played a full round of disc golf on Saturday.  We had a large crowd of 10 so we played partners. I was paired with Joe, we have a history of coming up short when paying on the same team.  We continued the tradition by missing 5 or 6 easy putts.  Joe carried us with his huge drives but I was able to hit a 30 foot putt from the bushes to card a birdie on the 9th hole, it was pretty cool! We finished second, one stroke out of the lead. I will continue to play with a modified throw for at least a few more weeks, likely the rest of the summer.  The traditional back hand throw puts a tremendous amount of stress on ones right ankle.
 
One year this week Joe, Pete and I were in Sweden and England.
It seems like a lot longer ago to me!  I’d like to thank Joe and Pete again for allowing me to join them, it was an incredible experience, I’d love to go back!

My Amarillo Sky

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Over the weekend while we were in St. Louis I copied a number of CD’s from my brother.
Being my big brother Doug, the genre is 100% country!

So this morning’s selection is from Jason Aldean and the song is “Amarillo Sky”.
Though it’s about a guy, on a tractor praying to God for good crops, a successful harvest, etc., this line really stuck with me:

….and I send up another prayer,
He says Lord,
I never complain,
I never ask why,
Please don’t let,
my dreams run dry,
underneath this Amarillo, Amarillo sky.

In all likelihood, Mary and I have a real big decision to make in a few weeks. One that we knew was inevitable, but was not directly confronting us for the last nine months. We’ve acknowledged and appreciated this time. I have no fears. As I said here early on; BRING IT ON!

We just talked at lunch and imagine this, we both settled on the same treatment (I won’t share until we know for sure). I guess that happens when you marry your best friend sixteen years earlier, it seems that we almost always agree.

easy peasy lemon squeezy

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On our drive back from St. Louis yesterday I had a lot of time to think. My thoughts mostly revolved around the current uneasiness in out lives.

Though we won’t know until my August appointment, we may have reached a point where we are going to have to make a decision for my next step, my next treatment. My PSA scores appear to have bottomed out and has even risen a little over the past two months.

We’ve been spoiled for the last nine, almost ten months. The pharmaceutical regime has done it’s job for the most part. I’ve been doing my best to do the right thing; taking my medications diligently, working out, eating well etc. However, Mary and I have not had to make any real medical decisions for quite some time.

We have a few options, which is good but one of them is Chemo……The others involve using additional medications that I will list in a future post.

This post is somewhat of a ramble but that does not make it unique for “the Big C’. Cancer really is horrible, advanced prostate cancer might just be the leader of the pack.


I am hesitant to add this next link. It is the website for an Australian man who passed away in May. He was diagnosed in 1997 at 42 years old. He lasted for ten years. I really shouldn’t have but I just read the update his wife posted that encompass the month leading up to his death. If you really want to read it [Mary please don’t!!!] here it is:
http://www.members.iinet.com.au/%7Ealbys/ Click on ‘Prostate Cancer’ then on ‘Updated June 07’. You have been warned, it is beyond sad……


OK, so you don’t think I’m moping around feeling sorry for myself, I have to close on a high note!!!! I played disc golf on the 4th. It was great to be out. I didn’t keep score but threw a few pars and a lot of bogies. Bogies were good considering I had to throw side arm and keep all my weight on my left foot. No complaints though, it was awesome! I’ll be back at it this weekend for nine or so holes again, slowly working my way back to full round!!