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://flhw.ddmpreview.com/three-words-and-a-few-more/
[note the last comment]
and
http://flhw.ddmpreview.com/euro-trip-716-17/
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.
Yes, an old Triumph send from the 1970’s…I dare include the lyrics!
In about 15 minutes I will depart for the Memorial Day weekend. I have to pause and thank
My dad, brother-in-law Rich, Bill B., Kirk M., Tattoo Steve and all those that served this country. Without your service and defense of simple freedoms like the freedom of speech – blogs like mine would not exist. I am grateful for your service and sacrifice.
Four rounds in just over three days, that is what lies ahead. 5:00pm today some of us are playing in the local disc golf league at Wyandotte County Park. A long course but with the hole-in-one fund sitting at $2,000 I’ll take a shot at a $1,000 (you have to split the pot with the club). Tomorrow is the usual, except Brad will be playing with us. Sunday and Monday we are playing as well.
I’ll need to come back to work to get some rest!
I have to get as much in while I can, not knowing what to expect post 6-9-08…..I’m not worried though, I’m going to tolerate chemo like a warrior!
Peace be with you all – and those of you stateside….Happy and safe Memorial Day!
A few medical updates after Monday.
I / we were not real comfortable waiting an additional week to start chemo (until June 16th).
Tuesday, Mary did the leg work, called the doctor’s office and inquired if if there was anything we could do in the next four weeks, or if there were any alternatives/options.
Yesterday they called back with some encouraging news. I will start treatments on the 9th as originally planned! This means on the 3rd I will have to spend most of the day at the hospital getting; a chest x-ray, a C/T scan and full body bone scan. This will mark the 6th set of the latter two tests. I imagine I might begin to glow at night, as they have to inject me with low-dose radiation each time they do a bone scan.
These last three weeks have been draining. Not only are the days longer, but the weeks seem to drag on and on. I never thought I would look forward to starting chemo. It’s just this; we made a decision, let’s get on with it.
Another somewhat stressful aspect is that we can’t really plan our summer. We wanted to take Brad to Colorado, I was going to take him camping, a trip to the lake, a weekend at my brother’s property, a trip to see my dad in St. Louis, and the annual get together with my sister from Ohio. Well all of that is currently in limbo. The whole chemo process could go according to plan; very few side effects, little fatigue, white and red cell counts stay high or near normal etc. but because we don’t know, we have to be careful not to plan too far ahead.
I pray for results like I had with Ketoconizal and other medications. I consistently responded well to previous treatments. Our hope is that the chemotherapy will get the cancer under control, my PSA will decrease, we can follow it up with other meds to keep it under control and resume a somewhat normal lifestyle for years to come. We’ll see.
I thank God daily for such a loving wife and wonderful, understanding son. I know he’ll love Colorado, when we finally get there……
So today was monthly update day, month number 39!
First of all the trial, being what I believe to be a typical trial, works like this;
– I have to be off Nilandron for 6 weeks BEFORE I can enroll. That wasn’t clear until this morning.
I did a good job of biting my lip when the trial manager explained this to us. So now I will have bone scans, CT scans and a chest x-ray on June the ninth and my first treatment in conjunction with my 40th month appointment on June 16th.
I did receive my PSA, it’s up again to 48.87. I suspected it had climbed as I have had a few twinges lately that I knew meant something. Not pain but just little things that after three plus years of this were signs.
I’m going to call Dr. Van tomorrow to make sure we are OK to wait another four weeks? I just don’t want my PSA to climb much more. My guess is that is the risk we take, I’m not sure I’m comfortable with that as I write this tonight?
I’m off to a baseball game, perhaps two hours of 11 year old baseball will take my mind off this for a while……
BTW – the port was awesome!! No needles in my arms and tomorrow I will test my ability to throw a disc again!
Historic Data:
5/19/08 48.87
4/21/08 38.31
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
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 1.45 (started Casodex again)
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 0.8
08/11/05 0.35 [nadir]
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 tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)
On Saturday night we lost another of the true champions of the prostate cancer community.
Ric Masten, who had fought the disease for over 10 years passed on to a better place.
A link to Ric’s website is and will remain on the left side of this page.
I have written about Ric here before, we exchanged messages a few times in the last year. I wouldn’t pretend to know him but his website has been a real inspiration to me over the past three years.
I was truly saddened by this news. Ric was a poet, an artist, a minister and a friend to many.
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Today I had my port installed. No complications to report. The procedure went very smoothly. My neck hurts a little, but that is to be expected. They made a small incision at the base of my neck on the right side and then about a two inch horizontal incision on the right side of my chest. I basically have a little bump on my chest. The staff at KU Medical Center were all wonderful, more details to follow.
On Sunday morning my friend Gary and I represented our company in the “Kansas City Corporate Challenge”. Our event was Men’s Doubles Disc Golf [was there a doubt which sport I’d play in?].
There were 151 men’s teams. The teams are grouped into divisions by company size. We were in the A Division along with Sprint, Cerner, Farmers Insurance etc.
We went out and shot -10 to win our division and along with one other team shot the lowest score of the day! Results Page
Here’s a photo after we received our gold medals.
It was a great round, we had 7 birdies on the last 8 holes including a few REAL long putts by me and a near hole-in-one by Gary!
Another chapter in my life of irony has been written!
Mayday
The term was made official by an international telecommunications conference in 1948, and is an anglicizing of the French “m’aidez,” (help me).
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Just a little humor regarding a very serious subject.
We got a call yesterday from the hospital, seems I have to go in on the 12th to have a port inserted. What is a port? Click here to see it in action. The webpage is that of a man who was being treated for Pancreatic cancer at the time. I include it for the pictures, read the narrative at your discretion. Not only will this be used for the Chemo treatments (beginning June 9th) but also for blood draws, monthly Zometa infusions and infusions for upcoming bone and CT scans.
Mary’s a little freaked out about it. I’m not……yet.
After 39 months, the inevitable is finally upon us. After meeting with my Oncologist today and receiving my updated PSA number (38.31) we had “the talk”.
I am definitely ready to take the next step and use a more aggressive treatment to try to to get the cancer under control. We have been fairly conservative during the past three years. Even so, we have had great results and I have no regrets on any decision we have made to date.
I am eligible for a clinical trial at the University of Kansas Cancer Center. We are researching it and at this point are favoring this protocol. It would be the standard chemotherapy (Docetaxel plus Prednisone) that I would receive, plus an additional oral medication (Atrasentan) that has shown benefit to other patients with advanced hormone refractory prostate cancer. It is a Phase III trial which is randomized, so I would have a 50% chance of receiving the additional medicine versus a placebo. I will receive the chemotherapy intravenously once every three weeks for 12 sessions, which means I’ll finish up in early 2009.
From the things I’ve read about this protocol it is very well tolerated. Most men continue to work or keep up with most of their daily activities. I plan on being no different. Fatigue usually sets in about 4-5 days post treatment which we plan to schedule so it would coincide with the weekend. So in other words, more movies, more couch time!
Crank up the prayer chain people…..I’m going to need a little help here!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Historic Data:
4/21/08 38.31
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
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 1.45 (started Casodex again)
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 0.8
08/11/05 0.35 [nadir]
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 tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)