July 31, 2009

The final tally

Today I finished this years World Disc Golf Championships, what a week it was.

I won't go on and on with round by round coverage but instead will share the personal goals I had established before play began.

1) Shoot a total score of 360 or better. This was a bit of a stretch and meant that I had to average 60. Turns out I missed by little averaging 62.5 for a total of 375.

2) I wanted to shoot at least one round 'rated' 900 or above. A round rating is determined using your score versus all the other players in you division based on some highly complicated formula even I don't understand fully. I consider this one a success because both yesterday morning and this afternoons rounds were over 900; 911 and 912, respectively.

3) I was trying to shoot par at the woods or 'Down Under' course but shot a 4 over 58. This included some terrible putting on my part. I missed 6 putts between 15 and 25 feet.

4) Finally, and most importantly I wanted to have fun and meet some new people - this was not much of goal to set because if I wasn't having fun, what was the point of playing? Today I played with a most gracious man from Japan and a retired Army veteran from north east Kansas. During the week I played with guys from Tulsa, Austin, west Texas, Seattle, St Joseph Mo and South Dakota. In addition I met many, many other local and visiting players that were just great guys.

Enough for tonight next year the event is somewhere in OH and I have a tee time in the morning!

July 27, 2009

What is this all about?

It's going to be a crazy week of disc golf with very few thoughts, worries and concerns about
Prostate Cancer. I will be wearing blue every opportunity I can get in addition to an FLHW hat
as well.

For those of you not familiar with the sport, here's a little insight into this week:


Note is the voice over: the largest event in the history of the sport!!

July 24, 2009

Welcome to my World(s)

Quick health update: I can feel the Keto working, seriously. Up until Tuesday I was experiencing pain where my thigh meets my right hip. While playing disc golf this last weekend I experienced mild pain when planting my front foot, a move that is very important to long drives. Anyway I started Keto Monday night I haven't touched the Advil since! I even went out a practiced my drives last night with the bro-in-law. The result was absolutely no pain and some rather encouraging drives!
I'm starting to get a little excited about the Disc Golf World Championships.
Here's a story from our local Fox affiliate and several links if you want to follow along next week:

July 20, 2009

Up, up and ?

We went to the KU Cancer Center this morning for my monthly visit with Dr. V and to receive my monthly Lupron shot. We left with one of those good news/bad news stories.

Good news is they took all the correct samples etc. and we were in and out in just over two hours! No missing vials, missed tests or long waits for the pharmacy. It was efficiency at it's finest!

On the other hand, my PSA was up, way up. It now stands at 97.04 up from 66.14 last month.
While we did agree to pay less attention to my PSA when we left MD Anderson in April, this climb has me a bit concerned. This is my highest level since September 2006.I did leave with two new prescriptions for Ketoconozale and Hydrocortizone (HDK). This combination is what I took in 2006 when my initial treatment stopped working. It worked for 16 months, then I tried Nilandron, then I did chemo. Going back to Keto + HDK is somewhat of a risk. There is a chance that it might not work at all. We decided to give it one more try before moving on to something more serious and more toxic. We can try DES (very low amounts of estrogen) but want to keep that in reserve and may end up trying that next. Until some of the newer drugs (Provenge and Abiraterone) are either approved or open new trials, my next choice is another round of chemo in combination with some sort of clinical trial.I knew my PSA was going to be higher, I just did not expect it to be such a dramatic increase.

Last month when we met with Dr. V we discussed the option of starting Keto again, as we were aware my PSA level was steadily trending upwards. I'm not sure about all this yet. Mary and I had lunch and I came back to work. My head is swimming right now with many thoughts.


On another note, the World Disc Golf Championships are being held in Kansas City next week. Nearly 1,000 disc golfers from around the world will be competing in various age groups and divisions. I signed up to play in the 'Advanced Masters" division. This is for non-professional men over the age of 40. We play one round on Tuesday, two on Wednesday and Thursday and one more on Friday (the leaders play again Saturday).

Several of the guys I play with (who are better than me!) are in the same division and over all about seven of use that play on Saturday's have entered in various divisions. Here is the website: http://kcworlds.com/

Starting on Tuesday the 28th you can see how I'm doing here: http://pdga.org/tournament-results?TournID=8105 Scroll down to "Advanced Masters" and look for my name, I signed up late so I'm not showing up as registered yet.

I really have no expectations but have set a few goals for myself; I want to post no score higher than the 60's and finish in the 75th percentile or my division. Us local guys should have a slight advantage playing these courses all the time, but we'll see if that helps at all! Overall, I just want to have fun, meet some new people and play respectable over the four days.

July 15, 2009

"Stable", adjective, from Latin stabilis

Main Entry: stable
Function: adjective
Inflected Form(s): sta·bler \l ""
Etymology: Middle English, from Anglo-French estable, stable, from Latin stabilis, from stare to stand Date: 13th century

1 a: firmly established : fixed, steadfast b: not changing or fluctuating : unvarying c: permanent, enduring 2 a: steady in purpose : firm in resolution b: not subject to insecurity or emotional illness : sane, rational 3 a (1): placed so as to resist forces tending to cause motion or change of motion (2): designed so as to develop forces that restore the original condition when disturbed from a condition of equilibrium or steady motion b (1): not readily altering in chemical makeup or physical state (2): not spontaneously radioactive

Are you scratching your head yet wondering what the heck I am getting at?

Well I picked up my copy of the scans and the Radiologist’s report and within the seven page report lies the bottom line, the conclusion the good news!

CT Scan: Impression
1) Stable sclerotic foci within L2 vertebral body consistent with blastic metastatic disease from the patient's known prostate cancer. No new sclerotic metastses are identified.

2) No evidence of hepatic metastatic disease or abdominal lymphadenopathy.

1) Stable sclerotic lesions within the hips and bones of the pelvis consistent with metastatic disease from the patient's known prostate cancer. No new osseous lesions are indentified.

Full Body Bone Scan
Stable bone scan with uptake in multiple pelvic osseous metastases. There is no scintigraphic evidence of new osseous metastatic disease since February 23, 2009

All this means is that the overall disease appears to be stable. On Monday we will find out what the blood and other markers (PSA, CTC, BAP etc) are indicating and we'll go from there.

Not sure what the options are, but we’ll be sure to let you know once we discuss with Dr. V, and perhaps Dr. L in Houston

July 14, 2009

How did you react?

In this case I broke out in hives!

Today I had a follow up bone scan and C/T Scan. Like everything else with this disease, it all takes time.

At 1:00pm I was injected with a radioactive isotope in preparation for the 4:00pm bone scan. Not much to the prep other than accessing my port and injecting me with a syringe they take out of a lead container that contains a warning symbol for radioactive material. It's kind of ominous.

Immediately after the injection I spent the next hour drinking a "creamy vanilla" mixture in preparation for the C/T scan. This scan was approximately my 4th or 5th in the last four and a half years. It's a relatively easy process that seems to have gotten easier over the years. My memory isn't the greatest but I do remember that the first few times the liquid was dreadful and it seemed to take a lot longer to consume, or perhaps it's just that the wait used to be longer after consuming the liquid. Anyway, after I finished drinking the required dose I was immediately escorted to the scan room. The C/T device is not like the scanner you see on TV or in the movies. It's like a gigantic donut. I lie on a table that slides me in and out of the donut hole. Before the scan starts however they injected me with some type of iodine that reacts
with the "Creamy vanilla" liquid in order to make 'areas of concern" light up on the scan. I can tell when they begin the injection, as I feel a weird warming sensation in my lower abdomen and bowels...lovely!

Today, shortly after the injection I started feeling a little itchy but thought it was the chigger bites from recent rounds of disc golf. As it turns out, I was was having an allergic reaction to the iodine and started breaking out in hives. I didn't put two and two together until they were done and I was back in the waiting room with Mary. I told her I was itchy, she pulled up my shirt and discovered a few hives on my stomach. I returned back to the procedure area and the doc, the nurses and techs knew right away what it was and 50mg of Bendryl took care of everything. The only problem was the Benadryl wiped me out and I needed a 45 minute nap when I got home. Also, now anytime I need a C/T I'll have to take Prednisone (steroids) the day before. Hopefully, it's low dose and at least my knees will feel good for a day! We were surprised that I had an allergic reaction, as I've had numerous scans previously, and I never had a problem. The doctor explained that one's immune system can be altered after going through chemotherapy, so we will assume that's the case.

Mary and I had 90 minutes to kill before the bone scan so we ran out to one of our favorite places to eat, the Blue Koi. Ever since chemo my favorite dish at the Blue Koi has never tasted quite the same. I am glad to report that today it was great once again! We both enjoyed the meal and our time together mid-afternoon.

The bone scan was routine: lie on the table and 45 minutes later, you're on your way. After receiving the Benadryl, I think I might have dosed off for most of the procedure and my ride home as well!

I'll pick up the CD's tomorrow and we'll review with Dr. V on Monday.
I'm not sure where this thought came from today, it may have been the murder/mystery I was reading or the article on Elizabeth Edwards from an old dog eared People Magazine, but I was thinking two things; I think Mary and I are doing a pretty good job of living a "normal" life. I'm not sure what normal looks like anymore, but my guess is there is some semblance of it in our day to day lives. That makes we happy.

The other thing I was thinking is I am grateful. Grateful for what you may ask? I am grateful for all the time God has blessed me with since this happened. So many people in this world die quickly, unexpectedly and without any warning. I was just reflecting on how lucky I actually am!

July 08, 2009

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!