Once again....

Once again a week has passed and I have failed to post an update.
I do have a slight excuse, we spent the holiday weekend in Minneapolis with a dear friend.

The weather up there was ideal, low 80's and no humidity and not a hint of rain. We had not been there in years, literally it was before Brad was born, so we're talking 1995? For that I would like to apologize. Good friends are hard to come by and we should have visited long, long ago.

The four days were a whirlwind of activity; Mall of America, a Twins game, Lake Minnetonka, Excelsior, Lord Fletcher's, Wayzata, a visit by Mary's old house, Lake Reilly, an afternoon cruise on the Lake, spending the evening sitting around the fire pit twice, way too many toasted marshmallows, smores and almost 14 hours of driving.

On another note. work is becoming more and more stressful as we get closer to the offer of a job or you're out of a job stage. Many people I really enjoyed working with are leaving. It's going to be a much different place, if I am extended an offer to stay.

Next week I have appointments for an updated MRI and bone scans followed the next week by my monthly Oncologist appointment. More on that in a later post.

Time is flying, but I hope it's clear, I am taking time to enjoy a little of it!

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.

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.

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!

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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.

Amen.

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).

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.

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!

2009 FLHW Prostate Cancer Disc Golf Tournament @ Yahoo! Video

A calamity of errors

I like to think that I'm a pretty calm, level headed, easy going person and I think those that are close to me would agree. I have come to realize this can create problems, problems that result from people thinking it’s acceptable to provide mediocre service.

Tuesday we went to the cancer center for my four week check up and Lurpon shot. As usual, I went to the lab first to provide a few vials of blood to be sent to the lab. Simply routine I've done this hundreds of times, literally.

Next off was a meeting with the doc, and here is where the frustration began. It was a calamity of laboratory errors to be kind.

First, the two new tests we started last month, in order to track the two markers suggested by Dr. L in Houston, were not completed.

Yes, I wrote that correctly and you read it correctly! Even though I provided specimens in late April the lab completely screwed this up.

The urine test was never run and the lab decided that the blood test to break down alkaline phosphate was not needed. Can you believe this?

Someone in the lab decided that because the total level was within the 'normal' range, breaking it down further was not necessary. I was and remain furious about this one.

After this part of the discussion with the doc there was not much else we could do except provide more sample and move on. Where we moved on to didn’t make me any happier. It seems the blood samples I had provided earlier in the morning failed to include a sample for PSA. Can you believe it? After four and a half years someone forgot to request the blood draw for a PSA, it was simply left off the lab order!

By the way, later on in the day we did get my PSA; it's up to 51.13

Next up, oh yes there is more, was my ankle. This part actually contains good news. I'll just admit it up front; I over did things last weekend. I played disc golf everyday from Friday to Monday, I worked in the yard Saturday and Sunday and over all was on my feet way to long. By Monday night my right ankle, the same one I broke almost three years ago to the day, was pretty swollen. Due to the fear of another blood clot we discussed with the doctor and agreed to run a new ultrasound of my right leg. The good news is nothing was found. After keeping my leg elevated as much as possible over the last few days I can report that it has returned to normal.

Finally, in regards to my PSA, yes we are concerned but we have to stay on track with what we agreed to after leaving Houston. It's a very hard pill to swallow, it creates anxiety, tension, worry, fear and more. That being said we have to remain faithful that the doctors know what they are doing and the Lord is guiding us down the right path.

Many, many thanks to all of you for your continued prayers, they are powerful and help us more than words can express.

Short, sweet and to the point

I'm finally resting after four straight days of disc golf and yard work.
It's cool, cloudy and raining off and on, so I'm catching up on paper work
for the foundation and paying bills.

As I sit here I've got iTunes up and just fired up Zac Brown Band, the song Toes. The course contains the line "..life is good today.."

and it is my friends, it truly is good today.

Younger Men with Prostate Cancer

I know it's been a while since I had anything personal to say, but I'm just taking the doctor's advice and getting on with living my life (to some extent).

We are in the midst of six incredibly busy weeks; I had to travel twice on business, we had the FLHW disc golf tournament, a graduation, a very special wedding in June that both Mary and I are a part of, wedding showers, rehearsal dinner, another charity event for FLHW, well you get the picture.

Below is an upcoming article that I received from a friend, Skip's Twitter feed.

Hope you all have a wonderful and safe Memorial Day weekend. God bless all the men and women in uniform, both past and present!

Finally - the the lady who commented on my last post, you can send me an email at: 'info at flhw dot org' (spelled out to avoid spammers).
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While young men with prostate cancer have a low risk of dying early, those with advanced forms of cancer do not live as long as older men with similar forms of the disease. That is the conclusion of a new study published in the July 1, 2009 issue of CANCER, a peer-reviewed journal of the American Cancer Society. The paradoxical findings indicate that there may be biological differences between prostate cancers that develop in younger men and those that develop in older men, and that uncovering these differences may help tailor screening and treatment strategies for patients based on age.

In general, a younger cancer patient has a better prognosis than an older patient with the same type of cancer. Few studies have analyzed the health of younger vs. older men after diagnosis and treatment for prostate cancer, though.

To investigate the impact of age on prostate cancer prognosis, Daniel Lin, M.D., of the University of Washington and colleagues designed a study to examine the association between age at diagnosis and health outcomes in men diagnosed with prostate cancer in the United States. Mining the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) database, the investigators identified 318,774 men diagnosed with prostate cancer between 1988 and 2003. Men aged 35 to 74 years were stratified by age at the time of diagnosis, and the researchers examined differences in tumor characteristics, treatment, and survival within each age group.

The analysis revealed that, over time, men are being diagnosed with prostate cancer at younger ages, likely due to more extensive screening. Also, younger men are more likely to be treated with prostatectomy, have less aggressive cancers, and have a better chance of survival after 10 years compared with older men. However, among men with advanced prostate cancers, the youngest men (aged 35 to 44 years) have a particularly poor prognosis compared with older men. These young men are more likely to die from cancer or another cause sooner than older men with similar forms of cancer.
While the reasons for this unexpected finding are not clear, the researchers suspect that young men with advanced prostate cancer may have biologically more aggressive forms of the disease than the forms that are diagnosed in older men. Additional studies are needed to determine what, if any, underlying differences exist between advanced prostate cancer found in young men vs. those found in older men. These studies may help clinicians improve screening in young men and could ultimately lead to the development of better treatment strategies for these patients.

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Article: "Treatment and survival outcomes in young men diagnosed with prostate cancer: a population based cohort study." Daniel W. Lin, Michael Porter, and Bruce Montgomery. CANCER; Published Online: May 22, 2009 (DOI: 10.1002/cncr.24324); Print Issue Date: July 1, 2009.