June 29, 2009

Where have you been?

June has not been a good month for the old blog. I've just been busy and otherwise mentally occupied.

On June 9th my 'Chemo-versary' came and went. It has now been 12 months since I started the chemo treatments. It seems like a lifetime ago.

Tomorrow would have been my Mom's 76th birthday. I find it really strange to imagine over 6 years have gone by since she passed! Talk about time flying!

Work has been a busy distraction. The pending merger was approved and now comes the headcount reductions and people positioning themselves for a role in the new company. I'm not one for 'playing the game'. I hope my historic results stand on their own. This is not to say I am standing by idly, but we'll see what happens.

Next month we are finally going to take some time off with trips to St. Louis, the lake and Minneapolis. We're just not certain at this point when we will do which.

There is also this Disc Golf event in town the last week of July. The World Disc Golf Championship (Professional and Amateur). It's four days and six rounds, and the opportunity of a lifetime. I'm still on the fence but leaning towards doing it!

That's all for now, have to go meet a cute blonde for lunch.

June 22, 2009

Doc, are you serious?

Today was my monthly doctor appointment. I am not sure where the time went...June is nearly over.

For the past weeks I have felt the same, no new aches and pains, no need for Advil or the like. As reported,
my knees hurt but Glucosamine is helping a little. I think chemo pretty much trashed my cartilage. As for cancer related pain, I really have none.

So, on to the test results. A little history; after leaving MD Anderson we agreed to pay more attention to everything going on instead of focusing primarily on PSA.

My PSA today was: 66.14
This is up from 55.13 last month. I was not at all surprised considering I am only taking Lupron at this time.

The three new tests came back looking like this:

Alkaline Phosphate (bone portion) - 6 [very low!]
Circulating Tumor Cells - 0 [excellent!!]

This was all followed by the fact they once again screwed up the forth test (the urine test). I could only ask, "Seriously?". Doc tried to lessen the blow by saying the other markers are indicating good things. I had to just bite my tongue and move on. He promised to write out very, very specific instructions for my appointment on the 14th. I'm not holding my breath.

So then we were off to the treatment center for a shot of Lupron and Zometa [a 25 minute infusion to strengthen my bones]. Turns out someone wrote the orders for next week, so it took 45 minutes to get that straightened out and then another hour to wait for the pharmacy. I'm really finding it hard to be patient in regards to the the service at the cancer center, but I will.

In the end, the plan is this; on the 14th I will have a bone and CT scan. The following week will be my usual four week appointment on the 20th. If at that time, my PSA has continued to climb we might start High Dose Ketoconazole once again. By then it will have been 17 months since I last took Keto and it MAY work again? Like a broken record, I guess we'll just wait and see.

June 18, 2009

New beginnings and some news that saddens me greatly

First and foremost, an early congratulations to my niece Megan and her fiance Alex! This weekend will be absolutely beautiful and may God bless you with many, many, many happy years ahead. The days, weeks and months leading up to Saturday have been hectic and stressful but that will all quickly be forgotten by Saturday and as time passes. Enjoy your honeymoon and the beach. I'm rather jealous of the whole beach thing! Your two are wonderful together and I wish you nothing but the best!
I received an email yesterday that the teenage son of someone I knew in grade and middle school had died. We were close friend friends for a while, but that was 35 years ago. None the less, this news has really made me sad. This blog contains too many stories about death, both those that I knew or others that I was just merely acquainted with. Perhaps this was just the proverbial straw that brings me so much sadness?

If you have a moment, please say this prayer for the family and the soul of their son.

Eternal rest, grant unto them, O Lord,
and let perpetual light shine upon them.
May the souls of the faithful departed
through the mercy of God rest in peace.

June 10, 2009

Nothing in particular

I have absolutely no idea what to write about today? So should I even bother?
Though the doc at MD Anderson said "Go home, live your life for a few months" I can’t help but wonder? At times I think we should be doing something and by something I mean treat this more aggressively. Then I begin to justify our actions or lack of action. My mind is a whirlwind of thoughts at times.This is hard, it's not very enjoyable at times, most of the time. I don’t let it bother me for more than a few minutes here and there, this just happens to be one on those times.
I can't believe it’s been two months since we were in Houston? Seems like yesterday.

This from Joel over at www.advancedprostatecancer.net:
The Simple Facts
* Prostate cancer is a complex and problematic disease that affects not only the male patient but also his wife or partner and other family members over many years.
* Each year about 28,000 Americans die from prostate cancer often a slow and painful death as the cancer spreads to their bones and other organs. (Only lung cancer causes more cancer-related deaths in American men each year.)
* In addition, every year, up to 70,000 men learn that they have potentially incurable forms of prostate cancer that severely impact quality of life and may lead to their deaths.
* By 2020 the number of men being diagnosed with prostate cancer may be as high as 320,000 per year because of aging-related demographics of the American population.
* African-American men have one of the very highest rates of incidence and death from prostate cancer anywhere in the world. They are 1.6 times as likely to be diagnosed with prostate cancer and 2.4 times as likely to die of this disease as (non-Hispanic) Caucasian-American men.
* In nearly every state in America, men who are un- or under-insured are at very high risk for diagnosis of advanced or late-stage prostate cancer.
* Despite recent data and media coverage about PSA testing and prostate cancer mortality, the early detection and appropriate treatment of clinically significant prostate cancer remains a critical priority, especially among men at high risk because of family history, ethnicity, or other factors that define such risk.
* We urgently need better tests for early stage prostate cancer tests that can discriminate between potentially aggressive cancers that need prompt treatment and indolent cancers that can potentially be managed with non-invasive treatments.
* Continuing innovation is imperative if we are to meet the urgent need for treatments that can save the lives and prevent the progression of this disease in men with aggressive and advanced forms of prostate cancer.
* No form of treatment has ever been shown to extend the survival of patients with advanced forms of prostate cancer by more than a few months.

* Every man has the right to know whether he is at risk for clinically significant prostate cancer that might lead to his death.
* Regardless of his age, every man should discuss his individual risk for prostate cancer with his doctor (i.e., his primary care physician and/or his urologist), and request the appropriate use of PSA and DRE tests until better options are available.
* Guidance issued by the American Urological Association in April 2009 (a) emphasizes that “The decision to use PSA for the early detection of prostate cancer should be individualized” and (b) suggests a “baseline” PSA test for well-informed men at age 40.
* Many other professional organizations, as well as the American Cancer Society, encourage discussion about PSA testing between a man and his doctor(s).

June 05, 2009

A long journey, that has just begun.

Tonight our foundation, Faith - Love - Hope - Win (flhw.org) is having our first in what I hope turns into an annual event. A very, very generous man has offered to donate 10 percent of the total sales (between 5 and 8 pm) at his greenhouse to our foundation. The details are within this flyer.

This however is not the point of today's blog. As I was coming into work today I was thinking about tonight and what Bill is doing for us and other non-profit groups here in Kansas City. I was also thinking about all the other people that are helping and have helped over the years. There are the smaller signs of support and large ones and the difference is not necessarily monetary. Sometimes it's the little things that touch me, like the simple beauty of that flyer. The two guys that helped us to design it were were so generous to offer their time and talent. One I barely know, the other I have never met, I don't even know his name.

I guess my points are these; not only am I deeply touched by their kindness and support but I am also rather proud that this little effort Mary and I began four years ago, is starting to gain some serious momentum. True, we'll never be Livestrong or Komen but that is not our goal or our purpose. It would be ideal for the Prostate cancer community if there was a single, national, powerful group, but that might be someone else's battle. FLHW has come a long way in four short years, $100,000 raised is nothing to sneeze at! 2009 however, in the midst of this economy, is going to be our best year yet!

I am wandering in my thoughts a bit today but it is my blog and sometimes I do that. I'd like to once again say thank you to our Board, all the volunteers, sponsors, players, donors and attendees that have helped make each of our events successful.

At times the world can be harsh and cruel and hard to live in. At other times the genrousity and kindness of strangers that reminds me that God put me here to help others and do my best to live a selfless life. For me, it's too bad it took so many years and Prostate Cancer for that to really sink in.

June 01, 2009

1,832 Choices

Over the weekend I finally found the time to pull together all of the pictures from our recent disc golf tournament. Funny how much more time I have when I don't play disc golf!

It turns out I have over 1,800 pictures from the event!
Below is a link to the video. The video is approximately 380 of the best shots with a music
soundtrack to boot. It's about 22 minutes long but well worth your time.

The statistics for the day are in the closing credits so you'll have to watch the whole thing to find out how we did!