Advanced Prostate Cancer

28 Days

Over the next four weeks, a lot of things in my life are set to transpire. There will be a number of milestones, appointments and decisions that will be strategically important in our battle against advanced prostate cancer.

– This weekend I will turn 45. Some say when you get older birthdays don’t seem to matter that much anymore. For me, they have taken on a whole new meaning, each one more and more important.

– Monday the 28th I have an appointment with my Oncologist. The results of that PSA test will tell us a lot about what’s going on now and what direction we take going forward.


– On Friday the 1st we are meeting with a doctor at the University of Kansas Cancer Center. Depending on the available clinical trials, this might be one option. Regardless of my PSA number we have reached a point were we almost have to make changes. A nerve racking, highly stressful decision, but one that we will make with a lot of medical and spiritual guidance.


– On February 3rd, this blog will be three years old. Over three hundred entries posted, many new friendships created, the documentation of my PC journey, as well as personal journeys shared from all over the United States and the world. The other day I received a personal note regarding the impact of this blog that touched me deeply. It affirmed for me that the original purpose for this blog is sending the message that I had hoped.

– On February 5th the FLHW Foundation is hosting the next Texas Hold ’em Poker Tournament. Details are available at the website (www.flhw.org)

– At some point early in the month I will have another bone and CT scan. There is nothing more pleasurable than having radioactive fluids injected into your veins. I guess chemo might be better but I’ll report my experience when that day arrives! The results of these tests, along with my PSA and Testosterone levels will help guide us in the next step.

– February 18th
is the third anniversary of my “official” diagnosis. I typed “Yee Haaa – a day to celebrate!!!”, deleted it, then wondered, “is it really a yee haa moment”?

– There is another appointment we may try to setup with a Prostate Cancer specialist. He is hard to get in to see, and would require a few days away from work, plane rides, rental car and hotel stay. He has a fantastic track record, but we are just considering this as an option at this point, no decisions have been made.

So, that is a peak into the next four weeks. In between all of this is family life, work and of course, just a few rounds of disc golf…..that is, if it ever warms up around here!

….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.

The simple things

In the the midst of a mildly chaotic life, there a few, simple things that bring me pleasure.

Of course there is disc golf. Who would have thought the first weekend in January would bring ideal weather for my second love.

Saturday morning it was 47 degrees at tee off, today it was 55. Yes, with weather like this, we played both days! Today we ventured to a park just north of downtown Kansas City. Water Works park is arguably the hilliest and one of the toughest courses in town. In addition, it has a number of fantastic views of the downtown skyline. We should play it more often, it’s quite challenging. I shot +7 which is respectable considering we’ve been playing a much shorter course in the woods all winter.

I’ll miss two out of the next three Saturdays due to early morning basketball games, but that’s fine with me. It goes without saying, a little more time with Brad is certainly more important.

This brings me to that which brings me the most pleasure, being with Mary and Brad. This weekend allowed a lot of time together. We put away all the Christmas decorations, cleaned up the yard and watched a little football. Nothing real exciting, but sometimes just being together can bring one the most pleasure.

As the cold weather is certain to settle in for the next two months, I’m really looking forward to more weekends and days like the last two.

I wrote what follows last month, as I flew back from Atlanta. It seems like the right time to include it here.

What He Became
12/7/07
It’s many years later,
he’s no longer a boy,
well on his way,
to becoming a man.

He’s solid and honest,
and his life is lived,
at a pace that allows
him to understand
and comprehend
the beauty that surrounds his world.

He tasted love,
but not yet settled,
his life,
or found her, his one.

What brings me the most joy,
is his confidence and peace,
and knowing that,
his longing for me,
has passed years ago.

And I smile.

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.

What a Beautiful Ride

Sometimes I run across music that captures my mood, my mood in another time.
Right now, I’m feeling great; no back tinges, my hips are allowing me to ride the exercise bike 2-3 times a week for 15 minutes and playing disc golf is as good as it’s been in a long time!

So today, I was at work reviewing technical documents, listening to my iPod when I ran across the song below. It’s by country western artist Gary Allan. I was given a copy from my brother during a visit to St. Louis in July. I’ve listened to it a number of times, but today it meant a little more.

I’m at one of those ‘top of the roller coaster’ ride moments, things are going well, even with a Dr. appointment next Tuesday…..

~~~~~~~~~~~~~~~~~~~~~~~~~~
Life Ain’t Always Beautiful – Gary Allan

Life ain’t always beautiful
Sometimes it’s just plain hard
Life can knock you down, it can break your heart

Life ain’t always beautiful
You think you’re on your way
And it’s just a dead end road at the end of the day

But the struggles make you stronger
And the changes make you wise
And happiness has its own way of takin it’s sweet time

CHOURS
No, life ain’t always beautiful
Tears will fall sometimes
Life ain’t always beautiful
But it’s a beautiful ride

Life ain’t always beautiful
Some days I miss your smile
I get tired of walkin all these lonely miles

And I wish for just one minute
I could see your pretty face
Guess I can dream, but life don’t work that way

But the struggles make me stronger
And the changes make me wise
And happiness has its own way of takin it’s sweet time

No, life ain’t always beautiful
But I know I’ll be fine
Hey, life ain’t always beautiful
But it’s a beautiful ride
What a beautiful ride

I feel like a number…..

…and that number would be: .35

Last Thursday (August 11th) I had blood drawn for my 6 week check up. Late yesterday we received the test results and my PSA number is down to .35!! It goes without saying, we are VERY happy things are still trending down.

As for next steps, I’ll have another test at the end of September and after that we’ll start discussing updated bone/CAT scans and the possibility of seeking an additional second opinion. Our thoughts are to go to Sloan-Kettering in New York or one of a few other hospitals. The issue right now is there are still very few trials or experimental treatments for advanced stage prostate cancer, so we are still in a wait and see mode for the second opinion part.

Preparations for the golf tournament are coming along great, my focus has been on business sponsors. To date we have one check in hand and about five to six other verbal commitments. With seven weeks left we have a lot of work left ahead of us but we are confident we’ll make it. “Money is research, research is the cure!!”
(For more information there is a link on the upper left of the page)

Thanks for all your thoughts and prayers, I couldn’t do it without you!

Sometimes hindsight is 20-20

Many of you have asked how I’ve managed to lose so much weight. I usually answer this question by describing the dietary changes we have undergone. The next question is tpically why we chose a low fat diet versus other methods (low carb etc.)? Early on in this “journey” we researched many articles, books etc. that linked Prostate Cancer to diet. Some of the arguments were stronger or perhaps more reliable than others, nonetheless, we came away convinced that we had to change our diet. Dr. Davis confirmed the theory that a low fat diet would be benfitial. One irrefutable statistic that stood out was the rate of prostate cancer in Asia is a mere fraction of the rate in the U.S. So what accounts for the difference? Some believe that it is the typical American high fat, red meat diet. It is these facts that convinced us to stop eating red meat and switch to a low/no fat diet. Along with red meat this pretty much eliminated dairy, bad news for us as cheese lovers!!! Boring? Yes at times, but the flavor of food has changed dramatically as well as the amount or portion size it takes to be satisfied.

My sermon has ended, but please read the article below! After reading the article, it makes me think perhaps the choice we made may not have been all that bad……

~~~~~~~~~~~~~~~~~
Study: Diet May Inhibit Prostate Cancer
By LAURAN NEERGAARDThe Associated Press
Thursday, August 11, 2005; 2:57 AM
WASHINGTON — A radical ultra low-fat diet and other lifestyle changes may help keep early-stage prostate cancer from worsening, says the first attempt to test the theory.

It’s a small study that tracked men whose tumors weren’t aggressive. Still, the research, published in the September issue of The Journal of Urology, promises to increase interest in whether diet might really help battle cancer.
The study was led by heart-health guru Dr. Dean Ornish, and used his famously strict regimen, where people become vegetarians, limit dietary fat to 10 percent of total calories, exercise regularly and learn stress-management techniques such as yoga.

Ornish’s studies show that regimen can help heart disease, but why try it on prostate cancer? There is some evidence that diets high in fat increase the risk of prostate cancer, and that certain foods _ such as broccoli, or the nutrient lycopene from cooked tomato products _ are protective.

So Ornish and fellow researchers at the University of California, San Francisco, recruited 93 men who had decided against treatment for early-stage prostate cancer, a route known as “watchful waiting.”

Half were randomly assigned to the Ornish diet and lifestyle regimen; the others weren’t asked to vary their usual routines. The researchers sent participants’ blood samples to Memorial Sloan-Kettering Cancer Center in New York to measure PSA, or prostate specific antigen, a marker used to track prostate cancer growth.
After one year, PSA levels had decreased 4 percent in the diet group _ unusual for untreated patients _ while PSA levels rose by 6 percent in the control group. That difference wasn’t big but it’s statistically significant, and the researchers plan to continue tracking the men to see if it really signals better health.
Also, six of the non-dieters had undergone cancer treatment in that year after all, because their disease was progressing. None of the dieters were treated.
Other cellular tests suggested the diet wasn’t just affecting PSA production, Ornish said.

“It’s hard to get too excited about these results because you took a population of men who, frankly, are likely to do well no matter what,” cautioned Dr. Durado Brooks of the American Cancer Society. But, “this definitely should open the door to more research.”

“This report undoubtedly will excite the aficionados and devotees of lifestyle changes for cancer but it should also give pause to the skeptics,” wrote Dr. Paul Lange of the University of Washington in an accompanying editorial.
Indeed, it comes just months after another study suggested low-fat diets might help women avoid a recurrence of breast cancer.

Ornish stressed that his study, partly government-funded, doesn’t mean men should opt for diet over conventional therapy. But these men weren’t getting conventional treatment anyway, allowing a clearer test of dietary effects, he explained. The diet may help men undergoing therapy, too, he added. “I always find it amusing” that people call the diet hard, Ornish said. “Compared to having your prostate removed? … The only side effects are you feel better and it helps prevent heart disease.”

More than 230,000 U.S. men are expected to be diagnosed with prostate cancer this year, and 29,500 will die, the cancer society estimates.