Advanced Prostate Cancer

Disc Golf Overload

Friday it was 70 degrees, so Gary and I skipped out of work at 3 in order to enjoy the weather and get in a quick round of disc golf.

We decided to play a course in Olathe, KS that we don’t go to very often. In the past I found the trees tended to be in the way, misplaced is a better description.

It seems in the past year they’ve done a lot of trimming, I really like the course now. Could be the trimming, or the fact I really took it to Gary. Sorry G, but I’ve only beat you a few times, and to take you by eight strokes was pretty darn cool!

Saturday it was warm again but windy. We decided to play at Wyandotte County Park as a warm up for a tournament on Sunday. There were nine of us and because the course is so long, we broke into three groups. I thought I shot horribly, but the wind was unkind to everyone and I was only beaten by three strokes, by Joe of course!

So Sunday rolls around and in additional to losing an hour of sleep, we lost any semblance of good weather. When we arrived at 8:30 the wind was howling at a steady 20mph with gusts over 30. In addition, the temperature was 45, at the most. It was a LONG day and in the end, I finished 5th out of 11 players in my division. It was fun and I met a few new players that promised to play in our FLHW Disc Golf Tournament on May 9th.

Monday I woke up a little stiff, but by this morning I was back to normal.

After all that, I just checked the forecast and it looks like the weekend is looking up!!!

In like a lamb…

On Monday, March 2nd, I had my monthly appointment for Zometa (bone strengthener) and Lupron (testosterone suppressor). I thought my next meeting with Dr. V was on the 30th of March, so I asked the lab to draw enough blood to run a PSA test.

The result?

Down to 36.41 or almost two points lower! Not a big decrease (considered statistically stable), but a move in the right direction none the less…We’ll take it!

It turned out we did have an appointment with Dr. V, but it was brief. He was going to provide feedback from a conference the week before, be he was not able to attend. We were going to provide him an update on our potential decision on next steps, but we were not yet prepared to make that decision.

Later that Monday, we were able to consult with a medical expert who shared with us his personal opinion of the best option for us to treat my specific condition. In considering where the treatments are offered, we may be headed back down to MD Anderson. We will probably pursue a clinical trial that offers bone targeted therapy. Given that my specific cancer is thriving off the tumors in my bones, we think it makes sense to find a treatment that targets the bone metastasis. We will make arrangements to meet with a doctor down at MD Anderson and ask for their second opinion regarding the next treatment.

That’s all I have to report for now. I’ll post further updates as the details unfold. In the mean time, taking it one day at a time!

ever so briefly

I know it’s been over a week, but I don’t have a lot to report.

I had a bone scan on Monday (Feb 23rd) and the good news is that it showed no new tumors. Also, the previously existing areas were stable. Ideally, the report would have indicated the tumors had shrunk, but we are choosing to look at the positive, they didn’t grow or spread!

We also gathered all my medical records and sent them to a PC medical expert for further recommendations. We have a call with him on Monday evening, and we are hopeful that he will be able to recommend several potential doctors that offer treatments that would be customized to be more effective for my individual condition.

Finally, on Tuesday night we held another FLHW Texas Hold ’em Tournament. I am pleased to report that we were able to raise another $1,300 for prostate cancer research. Congratulations to Mike (in the hat) who made a valiant comeback to beat Kevin for the title. Next up for the FLHW foundation is our second annual disc golf tournament on May 9th.

apprehension and ambiguity

Here area a few thoughts I jotted down on Monday in the moments before my appointment:

What if:
– it’s good news
– it’s not
– this never happened
– my response had been ‘average’
– I wasn’t surrounded by love
– I was silent
– I was still fat
– I ate a big thick cheeseburger

My thought immediately after the appointment was more like this:
– God I hate ambiguity!

My PSA is stable at: 38.16

I was hoping, as always, for a decrease, and although it is good news that the PSA level did not rise significantly, this just leaves us hanging. We agreed with Dr. V to take no action for the immediate future. The main reason is that although my PSA remains high, I’m not in pain, and if my upcoming bone scan results are consistent with previous scans, showing no upticks in bone involvement, it was recommended we not rush to a decision.

Furthermore, our next decision is a big one, therefore we are going to seek additional medical opinions. We are going to have my file reviewed by another medical oncologist, who will recommend where we should go for a second opinion. As the treatment options become increasingly limited, it is even more important that we chose the right treatment sequence. So our medical team will expand yet again. This is a good thing and we are grateful to all the doctors that have supported us and continue to support us through this journey.

We have files and x-rays to collect and send and we probably won’t have an indication of our options for at least a week, more likely two, so I won’t say a whole lot more right now. In the interim, we will try our best to maintain a positive attitude (admittedly, some days are easier than others!) and of course, continue to pray for God’s continued blessings and guidance.

Your Help is Needed

I don’t ask for much around here, perhaps an occasional prayer, but have rarely asked the readers of this blog to do anything.
Well that is about to change.
Though I disagree with many parts of the stimulus package, it does provide a major increase for the National Institute of Health. Those of us in the Prostate Cancer community would like to ensure the appropriate amount of money gets distributed to our cause.
If you could just take a few minutes and click on the link below. It will take you to a page that allow you to find your Senators and Representative and even has a pre-written letter. All you have to do is click and provide your contact information.

I’ll be……

Perhaps it’s four years of androgen deprivation therapy and the subsequent lack of testosterone circulating in my body, but I am so much more emotional than I used to be.
Last night we decided to stay in, have a nice dinner and watch a movie.
We split a few pounds of king crab legs, a bottle of wine and laid back to watch
Nights in Rodanthe” with Richard Gere and Diane Lane.
The movie itself was terrible. It was a poor attempt to recreate some chemistry between these two that can be found in the movie from 2002, “Unfaithful“.  Without revealing too much, it takes a rather sad twist at the end, and even as bad as it was, there I was with tears in my eyes. Mary asked “Are you crying?”. My response, “Can you believe it? As bad as this movie is, here I am getting all emotional about it!”
So now, here I sit, working on a Power Point deck for our church auction next Saturday. I am shuffling through iTunes at the same time and on comes “I’ll Be” by Edwin McCain. Here’s the video.   I find the whole song to be beautiful, such that it makes me cry nearly every time I hear it. Click on the link, and pay particular attention to the chorus.
———————————————————-
Edwin McCain; I’ll Be
The strands in your eyes that color them wonderful
Stop me and steal my breath.
And emeralds from mountains thrust toward the sky
Never revealing their depth.
Tell me that we belong together,
Dress it up with the trappings of love.
I’ll be captivated,
I’ll hang from your lips,
Instead of the gallows of heartache that hang from above.

[Chorus:]
I’ll be your crying shoulder,
I’ll be love’s suicide
I’ll be better when I’m older,
I’ll be the greatest fan of your life.

And rain falls angry on the tin roof
As we lie awake in my bed.
You’re my survival, you’re my living proof.
My love is alive — not dead.
Tell me that we belong together.
Dress it up with the trappings of love.
I’ll be captivated,
I’ll hang from your lips,
Instead of the gallows of heartache that hang from above

[Chorus]

And I’ve dropped out, I’ve burned up, I’ve fought my way back from the dead.
I’ve tuned in, turned on, remembered the things that you said

[Chorus:]
I’ll be your crying shoulder,
I’ll be love’s suicide
I’ll be better when I’m older,
I’ll be the greatest fan of your…
I’ll be your crying shoulder,
I’ll be love’s suicide
I’ll be better when I’m older,
I’ll be the greatest fan of your life.

The greatest fan of your life.
…greatest fan of your life.

———————————————————-

All of this leads me to tomorrow’s appointment with Dr. V. I’m tinged with worry. However, I usually am before these appointments. This time I’m not sure what it is? Now that chemo is over, the question of what next lies out there like….well I’m not sure what it’s like? Over the past few days I’ve been having a little pain on my back, nothing severe perhaps a 1.5 on a 10 point scale. It’s just enough to make me wonder, to make me worry.
I guess this makes me normal.

Year 5 Begins

I wish I could say “I remember it like it was yesterday”, but I don’t!

I know I was in a conference room in a previous job. I know Dr. D was out of town and I raised a bit of a stink with his office staff. I knew the biopsy results were back but the staff wanted me to wait to talk with the Dr regarding the results and I did NOT want to wait another four or five days for him to return.
One of his partners called me back and dropped the news… dropped the bomb, “You have cancer …blah, blah, blah…” whatever else he added was moot. My mind was a blur, I was a mess. Some how I made it through that day and the 1,460 that have since followed.
So here I sit, four years later about to embark on year five of this journey I wish it would have never begun. I have no sorrow, I live with no regrets. I am just a man looking forward, but never too far because of the unknown. What will happen next week, next month or in four more years remains a mystery. What allows me to sleep most nights is the fact that not knowing what lies ahead makes me no different than the rest of you. Plan as you may, you just never know what’s going to happen.
~~~~~~~~~~~~~~~~~~~~~~~
There is a writer for the New York Times, Dana Jennings. He too is keeping a blog about his PCa experience. Though his diagnosis and subsequent treatment are far different than mine, today’s post hit close to home. You should go read it at:
‘Love in the Time of Prostate Cancer’
His last line says it all:
“In the long shadow of prostate cancer, I’ve learned that I married the right woman.”
Though I might have changed it to:
“In the long shadow of prostate cancer, I’m reminded that I married the right woman.”

180 Needles later

This morning was a good morning, I gave myself my last injection of Lovenox! (see this post http://flhw.ddmpreview.com/im-not-lovenox/)
Six months of daily injections are over, woo-hoo!! Now it’s just a daily baby aspirin to control clotting.
The mention of baby asprin reminds me of when I was young and one of my brothers liked those orange Johnson’s Baby aspirin so much, he ate the whole bottle. I bet the thought of the stomach pumping that followed still gives him chills!
Four years ago today I sat at work and wrote how frightened I was about the results of the biopsy I had experienced the day before. As it turned out, I had good reason to be concerned. Those thoughts, that fear, feels like it is from another life, one that I no longer lead. Not that I am naïve about the road ahead, but dwelling on the negative does no good.

Spring is going to tease us once again for the next few days with temperatures climbing well into the sixties. If the wind cooperates, we’ll be spending a lot of time outside both in the yard and playing, what else!

Happy blog-aversary!!

February 2, 2005
The title, “Start of the end”.
How short sighted was I?
So many, many things have happened since then, I’ll try to communicate the highlights in the list below:
– Fear
– Acceptance
– The root of FLHW
– Disappointment in Houston
– Kenny Chesney, Boston concert, etc.
– Disc golf
– The beauty of Spring
– The continued importance of friends and prayer
– Reaching nadir so quickly
– Selecting an Oncologist
– The emotional ups and downs begin
– Anna Maria Island
– Sweden, the British Open
– The Lake
– The Kooks
– Holidays
– It’s not about me
– Birthdays
– The passing of Leona
– The passing of Ric, Rick, Wes, Aubrey, Chef Roger and other PCa brothers
– The power of Hope
– It is what it is
– Chemotherapy
– Friends from: New Zealand, Australia, Las Vegas, Tennessee, New York, Texas, Florida and more
– $100K for PCF
– Brad
– Mary
– the future….