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Lucky #7, again

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Last Friday, February 11th 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.

My blessings are always counted

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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

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

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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

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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.

What up with that?

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The irony of the title of this post is uncanny. I wrote the first half at 1pm today. Tonight’s update is below!
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My blood test from yesterday confirmed what I suspected, my PSA is increasing rapidly. It jumped from 81 on Dec 6th to 142 yesterday.

 

Due to the increase from October to December we had already begun our (My Oncologist, Mary and myself) attempt to gain access to one of three options; XL 184, Abiraterone or Provenge. These are listed in order of our preference.
– XL 184; I am not eligible for the current trial as it requires organ involvement. There is a new trial that is to open at any time that removes this requiremen,t but waiting is not really an option.
– Abiraterone; the good news is more and more sites are being added to Open Label Phase III Trial. The bad news is none are available in the Midwest. All of my paperwork has been sent to a location in Los Angeles, now we wait and see.
– Provenge; because this is not going to focus on reducing my PSA (according to what I have read) we are pursuing this as a secondary option. A letter of medical necessity was sent to UnitedHealthcare in mid-December, they have 30 days to reply.

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So this evening I get an email from the trial site in Los Angeles and now it turns out that their site is full. I wish they would have told me that weeks ago! Mary talked with the site coordinator as recently as Thursday, and there was no mention of full capacity being an issue.  Discussion was clarifying that Monday’s blood tests would be forwarded asap. I am frustrated beyond imagination. Time is of the essence. We are already scrambling to pursue access in either Atlanta, New Orleans or Palm Beach, FL.  More to follow as we find things out!

Focus Pocus

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With the new year will come a new dedication to exercise. I have been slacking off for the better part of a month. Though I have a reason, it’s not a very good one. I do experience the occasional aches and pains. Nothing serious, it is just providing an excuse to sleep a few more minutes. I plan to start the new year with a renewed vigor.

I am two weeks into the new medication (high dose Casodex) and though I won’t know if it’s working for two more weeks, I believe my body is saying it is working. Time will tell.

2011 will be here in a few days. There is a lot to look forward to this year. I’ll celebrate my sixth year of being a Prostate Cancer survivor. Where did the time go?  Brad will graduate from 8th grade and subsequently start high school. Mary and I will celebrate our 20th wedding anniversary and my dad will turn 80. I’m sure there are more, but for now, these are the milestones that lie ahead.

Happy New Year to all of you! May it be filled with wonderful times and glorious memories!

FLHW 2010 – a year in review

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A few weeks ago we made our annual donation to the Prostate Cancer Foundation (www.pcf.org). After setting what was certainly an aggressive goal of a $40,000. donation this year, a 25% increase from 2009, I am proud to say that we made it! With this donation our cumulative donation to PCF is now $175,000. In addition, each year we take advantage of a matching program which makes the overall donation $350,000.

I picked this up from the PCF website. From a personal view, the future looks very encouraging!
2010 has been a great year for advances in prostate cancer.

  • Two new drugs – Provenge and Cabazitaxel – were approved
  • Two more drugs – Denosumab and Abiraterone – are pending approval
  • A fifth drug, Ipilimumab, is in Phase III clinical trials
  • Researchers at the University of Michigan discovered the 24 types of prostate cancer
  • The cell of origin for prostate cancer was also discovered

To the FLHW Board, family, friends, donors, participants and sponsors for each of our events, I express my heart felt thanks. In the midst of the storm that is my battle with this disease, you all provide hope for me and hope for the men that will follow.

I found this story and it reinforces perhaps one of the ways we were able to accomplish this goal. You have to remember before reading this that overall charitable giving in 2009 was down again.

 
Kansas City Business Journal
Date: Friday, December 10, 2010, 2:49pm CST
Kansas City ranks No. 3 on a list of the nation’s most charitable cities, according to The Daily Beast.
About 3.5 percent of earnings in the city are donated.  Kansas City’s average household income is $84,923; giving per foundation amounts to $863,859; and there are 470,800 volunteers during the year — nearly 23 percent of the population.

FLHW 2010 – A year in review
(Dollar amounts below are approximate)
Poker for Prostates: February 16th 
44 Attendees
$1,500
2nd Annual Friday Night in the Greenhouse: May 7th
$1,400
3rd Annual FLHW Disc Golf Tournament: May 8th
43 Teams (the most ever!)
$3,000
1st Annual Warrior Combines: July 24th 
20 Participants
$1,000
Extensive coverage on Fox4 KC
Participated in ‘The Summit to End Prostate Cancer’ in Washington, DC: September 12th
Morse, Solomon & Ward/Ameriprise Customer Golf Event: September 17th
48 Players
$4,000
6th Annual FLHW Golf Tournament: September 24th 
132 Players
$27,000
Poker for Prostates: December 6th
33 Players
$2,000
Interview on sportsradiokc.com

A book and it’s cover

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I attended a holiday get together the other night. Like most of these type of events, it was a good mix of people I see often, and those that I haven’t seen in a while. 
At one point I was talking to a person that I see several times a year and whom I thought was up to date on my situation. My mistaken assumption. After a little small talk she asked how things were going with my health and made the offhand comment, ‘you’re in remission now, aren’t you?’. I gave her the update, and probably more since that is a habit of mine, but the conversation stuck with me. 
Now, a few days later and I began to ponder this;  I imagine for a lot of people at our church, school and neighborhood, who really don’t know me that well and aren’t probably readers of this blog, they see me and think ‘well he looks great, he must have gotten over it’. [note, when I said ‘looks great’, I mean healthy]. Frankly, I do look healthy and happy so how would anyone know. The same may be said about them and my view and assumption, I see them and they ‘look’ alright, but in reality I have absolutely no idea what’s going on in their life beyond the small talk we exchange at a holiday party.
There is nothing more, nothing deeper, just an observation on my part.
On to my treatment decision. It looks like after all we may be headed east, versus west. Nothing is concrete, but through some initial discussions with the clinical nurse it appears the opportunity in Los Angeles would  require nine round trips in the first three months. I’ll provide more updates as we get then but for now it looks like we might be headed to New Jersey three times in a month, but then we’d be done with that treatment.

Which road to take

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As I ponder what’s next and what lies ahead medically, I can’t but help think of the opening to the Robert Frost poem ‘The Road not Taken’
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
A slight difference is my road ahead not only diverges but divides thrice. If all three treatments become viable options, which one do we chose? There are puts and takes to each, both known and unknown impacts involving side effects and long term sustainability, but that still leaves us, as Frost implied, standing here, contemplating the choice, the future.
Perhaps, like the poem, we’ll look back on this decision like this;
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

Just another day….

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My day started with an email from a wonderful friend. With his permission I share it here: 
Bela read the FLHW card you sent.  Afterward we talked a little about FLHW.  She asked, "Papi, you remember when you came back from playing golf in Kansas and ask me to really pray for David"?  "Yes," I told her and I explained how the cancer appeared on your leg bone, how they radiated it making it go away, but how it would probably come back.  She said, "Daddy, I never stopped praying for him."
She got a long hug for that!
I'm not sure about you, but my eyes are welling up and this is the third or forth time I have read it. You wonder what gives me strength and provides me hope? I'm not sure there is anyway to make it clearer!
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I had a last minute request to appear on an internet based sports talk station this morning at 11:30am. The station can be found at: www.sportsradiokc.com
They promised to provide a recording which I will post later.