An update on 'the Buddy System'

As a follow up to the article that was published last June, the editors of 435 South Magazine asked John and I to film a little chat session that they plan to use on their website.

This was filmed sometime last September. It was completely unrehearsed and our one and only take. Let me know you think!

Dennis Miller Audio from 1_13_10

Prayers

I'm not sure if I have, or even should share the following? I figure, what the heck.

As we sat in Mass on Sunday and prayed, I stopped to think what I really was asking God for when I pray.
I don't ask for a cure to this disease, should I? Would that be selfish?
Mostly, I pray for time. I pray for good test results. I pray for happiness.

Next Monday is huge. Monday we will find out if re-starting Keto has helped. If not, we move on, but the options are not very encouraging.

The good news is that I feel great and would guess it is working, but we've been disappointed before, so I try not to get to excited. As Mary has put it, we are cautiously optimistic.

So I conclude with this:
God, give me strength
Allow me happiness in he midst of turmoil,
Provide me more time,
And the sense to know how to use it properly
In Jesus name,
Amen

Year 5 Begins

I wish I could say "I remember it like it was yesterday", but I don't!

I know I was in a conference room in a previous job. I know Dr. D was out of town and I raised a bit of a stink with his office staff. I knew the biopsy results were back but the staff wanted me to wait to talk with the Dr regarding the results and I did NOT want to wait another four or five days for him to return.

One of his partners called me back and dropped the news... dropped the bomb, "You have cancer ...blah, blah, blah…" whatever else he added was moot. My mind was a blur, I was a mess. Some how I made it through that day and the 1,460 that have since followed.

So here I sit, four years later about to embark on year five of this journey I wish it would have never begun. I have no sorrow, I live with no regrets. I am just a man looking forward, but never too far because of the unknown. What will happen next week, next month or in four more years remains a mystery. What allows me to sleep most nights is the fact that not knowing what lies ahead makes me no different than the rest of you. Plan as you may, you just never know what's going to happen.

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

There is a writer for the New York Times, Dana Jennings. He too is keeping a blog about his PCa experience. Though his diagnosis and subsequent treatment are far different than mine, today's post hit close to home. You should go read it at:

'Love in the Time of Prostate Cancer'

http://well.blogs.nytimes.com/2009/02/09/love-in-the-time-of-prostate-cancer/

His last line says it all:

"In the long shadow of prostate cancer, I’ve learned that I married the right woman."

Though I might have changed it to:

"In the long shadow of prostate cancer, I’m reminded that I married the right woman."

What the lack of sleep and large doses of steroids do to your mind!

This morning I woke at 1:30, just three hours after falling asleep. When I say I woke, I don't mean I simply rolled over, I was wide awake.

As I began to curse the Dex (Decadron) this one hit wonder, from the early days of MTV came to mind.:
www.youtube.com/watch?v=7z9bPrUark4
"Come On Eileen" by Dexys Midnight Runners was the biggest-selling British single of 1982. Remember when MTV actually played videos?! It's funny how your mind works......funny or frightening!

So, what is one to do at 1:30am? I didn't want to turn on the television and wake Mary or turn on a light to read for the same reason. So I reached for my iPod and began to watch "The Wire" - www.hbo.com/thewire My brother Dan told me about this show months ago but I wanted to start with season 1. In anticipation of last night, I used my Fathers Day gift and purchased the first season from iTunes over the weekend. This is great television; a cop show set in Baltimore that is "gritty, tough. real"!

By 4:30 I had watched the first two and a half episodes and thought I better try to get some sleep. I got two.

Another brother rests in peace.....

In early 2006, Mary and I spoke to a man named Rick from Houston. We have no idea how or where he found our phone number and frankly it make no difference. Rick was 46 at the time and had recently been diagnosed with advanced prostate cancer.

Well, it's another holiday weekend and another brother has been taken.
Rick's Obituary

I wrote of Rick here on a few occasions:
http://prostatecancerat42.blogspot.com/2006/02/three-wordsand-few-more.html
[note the last comment]

and
http://prostatecancerat42.blogspot.com/2006/08/euro-trip-716-17.html
Today's tears seem to contain more bitterness. They also seem to last a bit longer.
The tears and the hurt and sadness they represent sting more than previous losses.
Why? Perhaps the onset of chemo (14 days from today)?

God, please stop the madness.....

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.

More on Dan Fogelberg

Back in December I wrote about the passing of Dan Fogelberg.

Jean, the widow of Dan Fogelberg, has teamed up with the Prostate Cancer Foundation to raise money for prostate cancer research. A new song that Dan recorded back in 2005 is available. 100% of the proceeds will be donated to the PCF.

Details are available here

I have downloaded 'Sometimes a Song', and it's pretty good, I encourage you to do so as well.

....because I must

I'm tired, side effects of this cold I have been fighting for a week or more.
I am also tired because of 'this'.

Something that is rarely discussed by me, here, or on the prostate cancer message boards is
the mental and emotional strain of dealing with PCa. It's constant. I can't express the word CONSTANT enough.

I, we, have done a good job of living our lives in spite of the anvil that constantly hangs above our world. Now however, with a large decision looming, the anvil, and the strain of keeping it levitated increase at exponential rates.

I always have to add this so my words are not misinterpreted, I am not depressed. What I am pointing out here is simply this, you and I are different. You who live 'normal' lives, lives without cancer, get through your day differently than I do. Your conscious thoughts, those things that you think about in between the important aspects of your life, those thoughts are far different for me, than you. In those down moments you are like I was when I led a normal life. You think and wonder about what to do tonight or this weekend? Maybe you spend time thinking about simple things, regardless my thoughts at these times are ALWAYS about PCa. What does the rise in my PSA mean? What will it be on the 28th? Then what? And after deciding 'then what', will it work? etc. and so on.....it's really a #*^@ed-up way to get through the day.

But I go on, because I must.....for her, for him.....and sometimes....for me.

Another passing.....

Dan Fogelberg, a popular singer/songwriter of the '70s and '80s, died Sunday, at home in Maine at the age 56. He had battled advanced prostate cancer since being diagnosed in 2004.

I was never a huge fan, although I did like most of his music. My favorite song was his most popular, "Leader of the Band", which was a a tribute to his father.

"Leader Of The Band" - Dan Fogelberg
An only child alone and wild, a cabinet-maker's son
His hands were meant for different work and his heart was known to none
He left his home and went his lone and solitary way
He gave to me a gift I know I never can repay

A quiet man of music, denied a simpler fate
He tried to be a soldier once, but his music wouldn't wait
He earned his love through discipline, a thund'ring velvet hand
His gentle means of sculpting souls took me years to understand

The leader of the band is tired & his eyes are growing old
But his blood runs thru my instrument & his song is in my soul
My life has been a poor attempt to imitate the man
I'm just a living legacy to the leader of the band

My brother's lives were different, for they heard another call
One went to Chicago, another to St. Paul
And I'm in Colorado when I'm not in some motel
Living out this life I chose and have come to know so well

I thank you for the music and your stories of the road
I thank you for the freedom when it came my time to go
I thank you for the kindness and the times when you got tough
And, Papa, I don't think I've said "I love you" near enough

No more colors

The family and I watched a wonderful TV movie last night, "Pictures of Hollis Woods", a Hallmark Hall of Fame production. For as many times as I complain about the garbage on TV, this was a beautiful story. There is nothing that can be compared to lounging on the sofa and crying with your family (the good kind of crying). It's available on DVD, I'd recommend it to all.

I spent last week at a training class in Atlanta. It was without doubt, the best training class I have ever participated in. I left with a different perspective on communication, body language and getting a message across to a group. I could go on and on, but will just end it there.

However, on my way to Atlanta, my mind was obviously in a far different place as reflected in this poem. Please don't read anything into this - I'm fine, feeling fine, looking marvelous (a joke, a Billy Crystal reference)....

~~~~~~~~~~~~~~~~~~~~~~~~~~
No More Colors
(12/4/07)

What if your life changed,
things you loved,
and perhaps at times,
took for granted,
suddenly meant nothing?

What if just living,
breathing, getting through
another grey day, was
as much as you could,
find strength for?

What if the sun set,
on everything you knew,
and cherished,
Only to rise the next day,
without color,
without the brilliance or colors of God?

A life of cloud covered sky's,
one without color,
without the beauty you
had come to accept as truth,
What if your eyes only saw black, white and grey?

Read 'em and Weep!

There are a number of reasons for the title of today's blog. The last 24 hours have been, as I've described in the past, that part of my journey, my roller coaster ride, that I can reflect on and enjoy. I'm on an 'up'!!

First and most importantly my PSA number this month: 21.9

I'm trying to type and pray at the same time! Thank You God for giving me good news as we approach Christmas. I was not sure how Mary and I would have dealt with bad news hanging over our heads during the holidays? Obviously, we would like the number to be much lower, but at least it is not doubling, tripling, etc. As Dr. H would say, the change is statistically insignificant, which equates to a stable condition. I am grateful that I continue to feel good and that we don't have to worry about it this year!!

Number two, the 'Jimmy V' video is on ESPN right now.

Another reason is last night we held another Texas Hold 'em Poker event. We had a great time as you can see from the picture. Kyle (right) took home the first place prize, Bruce (far left) was second and my long time friend Steve took third. Due to the success of the event we will be making another $1,000 donation to the Prostate Cancer Foundation. It will be matched for a total of $2,000!! A large thank you goes out to everyone who played and contributed to the night's success!

Finally, I add this note with a bit of trepidation, however I feel I need to include the information. There is a wonderful, very spiritual woman at our Church that is facing her own cancer battle right now. She will start chemo soon and I would like to ask you to say a prayer for her, as she fights this devil, cancer.

I saw her and briefly spoke with her Saturday after Mass. The emotion and the fear were painted across her face. Mary and I know that fear all too well. I tried to be encouraging, I could only tell her she was in my prayers. I hope that somehow, my words comforted her. Once again....it's not about me. Damn this cancer!

So, as she continues her battle, I include and recite this prayer for her:

Prayer to Saint Michael:
Saint Michael the Archangel,
defend us in battle.
Be our defense against the wickedness and snares of the devil. May God rebuke him,
we humbly pray.
And you,
Prince of the heavenly host,
by the power of God,
thrust into Hell Satan
and the other evil spirits
who prowl the world for the ruin of souls.
Amen.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Historical Numbers
Date - PSA
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose
> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
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 1.4
51/27/06 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 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 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
12/?/04 189 (Original test)

A Cold December morning

We are off to see the doctor in a few minutes.

I am slightly apprehensive after last month's slight bump in my PSA.

It's the holiday season, I want and pray for a good number. I'm not being greedy here, not expecting or asking for my number to drop by 50%, just would like it to come in a little lower than last month. Something to indicate that the cancer has not started down the path that will lead us to our next treatment regime....likely chemo.

Also, just to add a little fuel to the fire and give some of you insight into what those of us with Advanced Prostate Cancer deal with, yet another clinical trial to treat Advanced PCa has been pulled. This one just happened to be the trial we were most interested in, both because it was available here in Kansas City and because of the nature of the trial. It turns out the incident of heart attack for trial patients was higher than anticipated. We are a little disappointed, but then again, we aren't there yet anyway. It's a bit disheartening as there are such limited treatment options for this stage of the disease.

Mary and I did spend the weekend decorating the house. I do love Christmas. The outside lights, trees and many many other decorations are scattered throughout the house. It kind of makes it easy to forget about cancer. At lease for a few minutes here and there.

Don't give up, don't ever give up!

My next doctor appointment is on Monday, the month flew by fast!!!

Combined with the onset of the holiday season, this video has my emotions running

high. I wrote about the same subject last year.

The video is Jim Valvano at the 1993 ESPY Awards. If you haven't watched it,

even if you have and it's been awhile, take the ten minutes and watched it again. Listen to his words and imagine for a minute......

What Cancer Cannot Do

Author Unknown
Winter 1999

Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.

One

I had a lot of time over the weekend to think. To think about nothing, to think about life, family, prostate cancer, the usual. I spent the weekend away from Mary and Brad with my brother Doug, brother-in-law Rich, and a few other friends, as they deer hunted.

I don’t hunt, so I just hung out around the cabin, finished a book, chopped wood, watched a few movies and listened to them discuss “would of, could of, should of”. As I write this, it’s Sunday morning. No one has gotten the big buck yet.

I look out the windows across the back of the cabin, I view the beauty of north central Missouri and I wonder what is next for me? When will it come? How will I react? After a few minutes the thought passes.

Next Sunday will mark thirty-three months. So much has changed, one thing remains constant; I have a terminal disease that may one day take my life. Even after this long, as I write these words, I am still stopped in my tracks. Again, the pause is brief, I go on, I must go on.

Today is one-one, one-one; November 11^th. My grandmother would have been 102 today.

However, today my thoughts wander to one person in a big world, making a difference? I am just one person, in a big world, trying in little ways to make a difference. I suppose I am, I wish I could do more, that is not to say I am not proud of what has been accomplished to date.

That is it, not one thought, just one man in one big world.

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

Foods I love;

- Salmon, grilled on a cedar plank with a glaze made from olive oil, brown sugar, thyme and cayenne pepper.

- White chili - prefer chicken to turkey. The more spice, the better. Served with Mary’s corn bread.

- My smoothie – even after 500 of these, every Monday thru Friday for 33 months.

- Mary’s red sauce with roasted tomatoes and garlic on any pasta noodle.

- A crisp, fresh pear

A new favorite song........

I’m just sittin’ out here,

Watchin’ airplanes,

Wonderin’ which one,

You might be on?

With apologies to Fall

So as you know, I'm not a big fan of the Fall season.

While I do like a few things about this time of year, the fact that nature is preparing for the on set of Winter does not do too much to brighten my spirits.

However, the other morning I found two reasons to issue an apology to Fall. The pictures are not high quality, as I took them with my cell phone camera.

The first are the last three roses of the season. Mary and I grow a pretty mean rose. Several of the plants have reached heights of eight feet, and these are not climbers. Three roses, each from a different plant, each a different color. There's that number three again.....hmmm?



The second is a picture of our Indian Summer Maple tree. I missed it's peak by a day or two but I hope you see the source of it's name. It truly is at it's best during Indian Summer.


Tick, tick, tick.....what's that? The sound of my heart racing as I wait for my monthly test results!

After the letters, we moved on to the numbers

Finishing up on my adventure through my iPod. If you don't remember, or are new around here, back in September I started listening to my iPod in alphabetical order by song title. It's been amazing and a fantastic way to shuffle through the entire 6 meg stuffed into my iPod Mini.

With 14 songs to go (of 1307 in total) I got through the letters and switched to songs that being with numbers. First up was:

100 Years by Five for Fighting - a song that hits too close to home, my eyes well up almost every time I listen to it. "there's never a wish better than this, when you only got a hundred years to live"

15 Beers Ago by the Deaf Pedestrians - I think I got this as a free iTunes song. A head banger, I think they are a Dallas based band?

Well I might've gone too far
'Cuz now I'm sitting at the bar
Without a beer and 13 rednecks
At the bar.

And they're talking about their trucks
And if the Stars will beat the Ducks
And the band onstage that sucks
At the bar.
And this is how I'm gonna end it...

1979 by Smashing Pumpkins - my favorite Pumpkins song by far.

19th Nervous Breakdown by the Rolling Stones. A classic, listed without comment.

29 by the Gin Blossoms. It didn't garner much (any?) airplay but one of my favorites

Only time will tell if wishing wells
Can bring us anything
Or fade like scenes from childhood dreams
Forgotten memories

3 AM by Matchbox 20. The chorus reminds me of 3 A.M. conversations with Mary.

and she says baby
it's 3am I must be lonely
when she says baby
well I can't help but be scared of it all sometimes
the rain's gonna wash away I believe it

40 by Section 5. This a cover of the U2 of the same title. However, Section 5 is a string quartet and the song is from the album titled "Strung Out on U2" [thanks Gary], the album is a must for any avid U2 fan, very cool.

Finally, what was last? What song was #1307? Was there more irony, as noted in earlier posts? Not really.

The final song happened to be 8th of of November by Big and Rich. Put any disdain you may have for country music and listen to this wonderful tribute to the 173rd Airborne during what some say was one of the deadliest battles in Vietnam.

On the 8th of November,
The angels were crying
As they carried his brothers away.
With the fire raining down
And the Hell all around
There were few men left standing that day.
Saw the eagle fly,
Through a clear, blue sky
1965, the 8th of November.

It's wonderful.....isn't it?

Just feeling a bit perky today, not sure why.

A few songs that reflect my current mood:

James Morrison - Wonderful World
O.A.R. - Wonderful Day
Sam Cooke - What A Wonderful World This Would Be
and of course the granddaddy of them all......

Louis Armstrong - Wonderful World

We have a busy weekend ahead of us before Monday's monthly doctor appointment.....A chilly round of disc golf tomorrow morning, a trip to the vet, yard work, dinner with friends, the Chiefs vs. the Packers (Favre's last trip to Arrowhead!).....

I've been ever reluctant to predict test results, but I'm feeling good things for next week!!!

This is such a great song, the words to the chorus, though WAY off base are beautiful, as is the rest of the song.
From the chorus of James Morrison's Wonderful World:

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

I love a parade.....

I started this entry (from Boston) thinking it would be real easy to find the Broadway show or movie that this song came from....well I couldn't!

What I did find out was more than I ever wanted to know about Harold Arlen. Not only did he write "I Love a Parade", but also "Stormy Weather", "Over the Rainbow" and many, many more. My suspicion was that it came from "Music Man" but I could find no evidence to support this idea.

Anyway, I'm in Boston for a conference and while I had hoped to spend the evening in some local restaurant or pub watching the Red Sox win the World Series, the Rockies did as well as my Cardinals did against the Sox in 2004. So now I might have an opportunity to witness the 2007 World Series Parade in downtown Boston.... depends on the start time and my schedule at the conference tomorrow.....

My next monthly doctor appointment is a week from today. I find myself very indifferent about next week. Perhaps because, once again, there is no change in how I feel. This is a good thing - certainly no complaints! So, I'll have some 'chowdah' with an old friend tomorrow night and some local seafood and travel home on Wednesday night. Happy Halloween and a Blessed All Saints day as well!

Sunday and Sundown....

Eventually two things will come to an end; first I will get through my complete iPod play list and second, we will finish painting my brother in law's house! I would put money on the latter, I have just reached song 995 of 1,246. Yesterday morning yet another bout of irony, songs that began with "Sunday" in the title (think U2 etc.). But my favorite song of the day had to be "Sundown" by Gordon Lightfoot.

Sometimes I think it's a shame
When I get feelin' better when I'm feelin' no pain
Sometimes I think it's a shame
When I get feelin' better when I'm feelin' no pain

It was quite a beautiful weekend in Kansas City, 82 and sunny on Saturday, windy and 65 yesterday. It was nice enough that we played disc golf both days. Saturday we had a big crowd and played a two man scramble, yesterday there was just four of us and we played down in the woods to avoid the 30+ mph wind gusts. I held my own and squeaked by with a one shot victory over Rich, Pete and Jud.

We spent seven hours Saturday and five more yesterday painting. The house looks great we are both aiming to finish next Saturday! I'm strange, yes for a lot of reasons, but I like painting, I always have. In some way I find it therapeutic or relaxing. I'm not sure what Ralph Macchio's problem was?