David’s Blog

Me, wearing less than my birthday suit!


It’s kind of weird to post this, but aren’t some of my other posts weird as well?

At the left is a copy of my most recent bone scan. The black spots on my left rib cage and hip (right side on the scan) are the ones of most concern. Not all the dark areas are bad; look at my skull, knees and shoulders for example, those are shadows. It’s strange there is a noticeable area on my left hip but the pain I’ve been experiencing is on my right side? I’ve read and experienced it many times, there is a tendency for those who have cancer to attribute every ache and pain to the cancer! Perhaps it is a muscle pull?

Leg update: the past two days have been much better. Thanks to the advice from the nurse, I started taking Advil as soon as it starts acting up. Apparently Advil can take up to forty five minutes to kick in and I was obviously waiting far to long before taking it. Sleep the last two nights has been worse, more tossing and turning, the only position I can find comfort is flat on my back. I’ve completely skipped working out the past two days as well to make sure I do nothing to aggravate the area.

My first Zometa treatment is now scheduled for the 18th and my next blood test the 25th. Followed up by a doctor appointment on October 16th and my second Zometa treatment the same day.

Brad turns 10 tomorrow!!! It’s amazing how time flies…I love him so much…

Doctor, Doctor give me the news….

We met with my new Oncologist this morning and there is some good news, no chemo for now.  He apparently has more direct experience with Prostate Cancer than our previous Oncologist and would like to try a few more things before we proceed to chemo.

Step 1 – stop taking Casodex again, test my blood in two weeks and then again four weeks later.
Step 2a – if this works, ride it out again and see how long we can keep my PSA in check.
Step 2b – if not, before chemo try one more drug that has shown some limited success:
Ketoconazole (Nizoral) Produce response similar to that of antiandrogens. Inhibit a variety of cytochrome P-450 enzymes, including 11beta-hydroxylase and 17alpha-hydroxylase, which in turn inhibit steroid synthesis.

We need to do some additional research on the drug, one of the main things it prescribed for is "anti-fungal"? However, if we proceed and we see positive results from Ketoconazole, again, ride it out for as long as we can.  If we don’t see the results we are looking for, well then we cross the chemo bridge. 

According to the doctor, there is no risk in six to eight weeks versus now. If  the bone metastasis was extremely aggressive, we’d begin right away.  But since my recent scans show only a slight  increase in activity we agreed with his recommendation to at least try this regimen first.

The bottom line is chemo is off, once again, for at least 6 weeks, 8 weeks, maybe longer?  On one hand it’s a tremendous relief to us both.  On the other hand we have left the station for another ride on the emotional rollercoaster!  The stress of this cannot be conveyed via this blog.  It’s constant, it’s a burden, it’s something we deal with constantly….in between holding down a job, raising a son, running a foundation……breathing…..

We are going to proceed with the Zometa treatments.  This is a drug used with Osteoporosis to help strengthen bones.  In prostate cancer patients (advanced) it helps fill in the areas the tumors may have weakened.  It a fifteen minute procedure give via IV.  This will commence on Monday or Tuesday of next week.

__________________________
We discussed the leg pains.  After work yesterday they were pretty bad.  The sofa, the heating pad and 800mg of Advil and an hour later I was fine.  Last night I slept very well again as well.  This morning I was able to work out without an issues (upper body only).  He moved and bent my leg and asked me if it hurt?  Of course it didn’t at that time, he thought perhaps I pulled a muscle?  As you’ll see, I’m not sure I agree with that diagnosis?

I decided to work from home today.  Everything was fine until about 12:15 when it began to hurt, the heating pad didn’t help, neither did the dose of Advil at 1:30.  By 2:00 I was laying on our bed in agony, it was so bad I couldn’t call the doctor.  It did subside enough that twenty minutes later I called and left a message with the nurse.  By 3:00 I was able to do some work. I moved to the couch because it seems to be more comfortable overall and things have been good since (three hours).

I’m not sure what we’ll do about the leg?  It’s weird that it comes and goes?  Perhaps one on the tumors is pressing on a nerve?  I wonder if radiation is in order?  I hope to doctor calls back soon, I don’t want another flair up tonight….or ever!  That was perhaps the worse pain I have experienced in a long time, in my lifetime.

Slight Pain Redefined

What began as a slight discomfort in St. Louis had turned into out right pain.  It had completely gone away by Sunday morning so I played disc golf with my brother-in-law.  We both shot 1 over par and I did so with not even a twinge. However, by mid-afternoon Sunday I was hurting.  I tried Aleve but it provided no relief.  By Sunday after dinner I was on the couch with a heating pad on my leg. Four Advil later it was bearable. 

Sleeping on the other hand was a task.  Mary and I were both up from about 2:30 to 4:00am.  Monday morning was somewhat better and I was able to last until noon before I had to reach for the Advil.  Last night I must have found the one position on my side that relieved the pain and was able to get a good nights sleep.

I was able to work out (no leg exercises at all) and am doing ok this morning as I work from home.  Tomorrow at 8:30 we meet with the new Oncologist.  We also did receive a call from the previous Oncologist regarding clinical trials, etc. at MD Anderson or Sloan Kettering.  Her message indicated that both doctors she talked to were also of the opinion that the Taxotere regimen is the best next step.  My guess is, upon leaving tomorrows meeting, we will receive confirmation again that the chemo treatment will begin the following week.  We will also inquire about the pain and the need for any radiation treatments.  Im not sure why but Im less concerned about chemo than radiation?  It just sounds nasty?!

A brief update

Yes, I’m wearing them! (for those of you who might not get it right away…like my wife…refer up to the title!)
OK, I admit it, it’s not that funny!

The nurse called yesterday with the results of Wednesday’s test. The CT scan is still clear, no activity in organs, lymph nodes etc. The bone scan showed no new areas but a slight uptake in activity in several areas, mostly around both hips. WIth my PSA rising as it has, this is not unexpected. Also, this probably accounts for the slight pain I have been having in my left thigh. That and the fact I ran 1.3 miles on my Dad’s tread mill yesterday. (Mary is NOT happy!!!) No more tread mill or running for me. No more exercise bike, per my Urologist (it can really screw up PSA readings). This leads to two things: anyone want to buy a practically brand new Schwinn stationary bike? It comes with an extended warranty, less than 6 months old, programmable, it’s very nice!!? Second, any ideas on a good low/no impact cardio workout?

The family in St. Louis is fine. We even got to spend a few hours with my sister and brother in law from Ohio on Wednesday night and Thursday morning before they drove home. We attended a very nice service for Grandma. The flowers were beautiful. She would have definitely approved. She loved flowers. As time passes and our focus adjusts from loss to comfort in many wonderful memories of her, we will be content that she had a wonderful, full life and we are very fortunate to have been a big part of it.

Eleven of us went out for dinner last night. As typical of most familes, our diversity showed in the food we ordered: steak, chicken spedini, grouper, canneloni and pasta con pollo for me. It was a beautiful night, we sat outside at a small restaurant in the Soulard area. On the way home we drove by the new Busch Stadium (where the Cardinals were beating the Marlins!!), it’s a beautiful stadium at night, even from the limited views we had. I wish we had enough time to take in a game. I need to take Brad to a night game there Of the previous games that we have attended at Busch, they were always day games.

Enjoy your holiday weekend!!!

A slight delay

This afternoon Mary and I met with my Urologist, a.k.a., the worlds greatest doctor (WGD). We discussed my rising PSA numbers, tomorrow’s scans and the plan for chemo next week. He agreed with everything, including our concern about starting chemo on Tuesday. While we acknowledge that chemo is inevitable, we want to make sure we select the most effective protocol possible. The doctor affirmed that pursuing chemotherapy now, while I am still in good shape – strong, both physically and mentally, will lend itself to a more successful result from the regimen.

Additional updates we are considering…though my PSA number went up to 54.66 on August 18th, when we met with our oncologist last week and had another blood test on 8.23, it was down to 41.77. Still high, but a 24% fluctuation. Additionally, she is moving to another office located in north Kansas City. She is staying with the same group, but the location is not practical for us. With her departure, she will be transferring us to a peer in her practice, a doctor we have yet to meet. (I’m not real comfortable walking in there Tuesday and meeting him for the first time as he injecting me with Taxotere). WGD called the new oncologist while we were there and posed the question of potential clinical trials that might offer potential benefit to my situation. He agreed that we should meet to review the latest scans, PSA results and potential trials.

Another issue is there are a few clinical trials we would like to investigate before we move forward. Both include using Taxotere, but they combine the chemotherapy (Taxotere) with other ‘ingredients’. Our thought is, as long as the study includes the standard, bench mark treatment, we’d consider it. Both of these do. The only issue so far is one is in Columbia, MO (two hours away) the other in St. Louis, MO (four hours away). In both cases it appears the treatment regimen is weekly for three weeks, then one week off. This would require a lot of travel and time away from work. Perhaps they could be administered here in KC? We’re not sure if that is even an option.

So our next step is to receive a call from the current oncologist Friday. She will have the results of tomorrow’s scans and also update us on potential trials at MD Anderson and Sloan Kettering. If cancer activity is captured on the scans, chemo is definitely the next step. What still remains to be determined is what, where and when?

Billy Joel was just plain wrong!!

“Only the good die young”? Oh how wrong you were Mr. Joel!

We got a call this morning that we knew was coming. As much as you prepare yourself mentally, it just really hurts when it comes to fruition. My Grandmother passed away this morning.

As I’ve mentioned here before, she was truly a saint. Born in 1905 she visited King Tut’s tomb via steam ship in the 1920’s, she lived through the depression, two world wars, and lived for almost forty years after my Grandfather passed away. She will be missed by all. I love her so much. I know she is in heaven, she was sent from there after all.

So, after spending all day being poked, prodded, jabbed and examined, Wednesday night we are off to St. Louis for the services. Then it’s back to KC on Saturday for several Labor Day weekend gatherings before T-Day (treatment day).

But will it ‘Hurt’?

It looks like we’ve reached the next step. I had blood drawn again today. The doctor just wants to make sure there was no mistaking the 54.66 reading from last Friday. I also have scheduled new bone/CT scans next Wednesday the 30th. The blood test and the scans will determine a baseline.

Dr. Sheehan is going to place calls to both MD Anderson and Sloan Kettering to verify the availability of any clinical trials. If nothing fits my particular case, I will begin Chemo on the 5th of September.

I worry, not for me, but for her. The stress, the concern, the “what if’s”. I have to do my best to help her focus on what good may come of this. Many side effects COULD happen, none of them might.

And so I go on, a new chapter, a new story unfolds.
The woods of Sweden all ready seem like a lifetime ago……
~~~~~~~~~~~~~~~~~~~~~~~~
Though the song in it’s entirety doesn’t necessarily fit the topic, the beginning seems to say it just right:
Johnny Cash
“Hurt”
I hurt myself today
To see if I still feel
I focus on the pain
The only thing that’s real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything

Additional thoughts on 54.66

So I get in my car after work, Im driving home, thinking. Thinking I should let out a good cry, I mean after all isn’t that what I should be doing? If you thought yes to that question you need to go back and read more of the thoughts I have shared in the past! However, this really and truly sucks and Im pretty darn ticked off at this point.

Of course Im not going to cry! As a matter of fact the nausea I was experiencing right after lunch passed and I consumed my usual afternoon regiment of carrots, raisins, yogurt, an apple, a Power Bar and, well that was about it. I was able to get through quite a bit of work considering. Mary and I talked a few times. She found one potential clinical trial that combines Taxotere with some type of vitamin-D concentrate. The best part is at a minimum I would receive the same treatment that I would receive if not in the trial. Well see, there is a lot to discuss with Dr. Sheehan tomorrow.

I fight on, again. This is not over. It’s not even close to over. Cancer took the latest round but there are many, many more to come right now I have a feeling Im ahead on the scorecard!

At this point I again can’t help but think of others. There is a little boy in our Parish, Ben. He has eye cancer. They thought they had gotten it all but it has come back. Now they have to remove his eye AND he has to go through 52 weeks of chemo (not so bad for me after all is it!!) Ive never met him but it’s my guess hes one heck of a kid!!

There is a prayer service for him tomorrow night, Im going to try to go. I ask that you add him to your prayers.

The dreaded call….54.66

If you ever find yourself in this position (battling cancer) and the following event happens, be worried, very, very worried:

I had blood drawn for a PSA test on Friday. So today, as I’m having lunch with Mary and Brad (before he starts school tomorrow), the phone rings.

“This is ____ from the doctor’s office, she would like to see you at 8:00am tomorrow morning to go over your test results”. (She couldn’t actually give me the number), “One of the nurses will have to call you back with that information”.

Second call: “This is ______ from the doctor’s office I have your PSA results, your number has risen dramatically, it is now 54.66. Dr. Sheehan would like to see you tomorrow morning at 8:00 AM”.

So now I sit here at my desk trying to fight back the urge to purge my lunch. Sorry, but as you know I don’t hold much back here. I also am fighting the urge to cry and curse and hit something and just curl up for awhile in a dark, quiet place…….

Looks like chemo comes sooner than later.

Like last winter I’m not concerned about the actual treatment regimen, I’ll approach it with my usual “bring it on” attitude. It’s the fact that we have to face this step…….now – so soon.

Do you think we’ll sleep much tonight?~~~~~~~~~~~~~~~~~~~~~~~~~~

Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called “The Mighty” and “The Wonder-Worker” because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.

Euro Trip – ‘The Open’ and the close.

It’s Saturday morning, the day of the Open. I’m tired, I need a long hot shower, a large hot meal and a bed, sleep…..

The amateurs started on the Ancient Course (easier of the two, if only slightly). I find my way out the 8th hole where I am paired with two chaps in the “Advanced Am’s”, Dan (a Brit) and Rutger (from Holland) and Kev (another Brit) who is also competing in the am’s with me. Dan and Rutger were pretty good, Kev had only played a dozen or so times before the Open. I threw an awesome first drive, followed by 71 other shots that were not so good. My putting was horrific. I blame it on exhaustion. While I had shot a 51 in KC the day before we departed, hitting putts from all over the place, I probably left 6+ strokes out on the course today due to poor putting. By no means would I have done as well as Pete’s 57 (par), but if I could have hit a few putts, a round in the mid sixties was easily possible.

Like the Modern Course that we played on Friday, this course offered a challenging layout; uphill, downhill, long, short, hyzers, anhyzers, woods, fields, nettles etc. The best part of the round was when Dan offered me the use of his one-man tent on Saturday night. Additionally, he was able to also scrounge up an air mattress as well! Ah, sleep!!!!

After they regrouped the players based on our first round scores, I was paired with the three Brits; ‘Richard the 5th’ (one of the chaps camping next to us), Tom and Sharon. Richard played better than the rest of us proving his first round score was an anomaly. I shot one stroke better than this morning but continued to struggle with my putter. A perfect example was the long par four 7th hole; I threw a long drive that rolled just into the infamous briar trees. I was able to get off a good second shot and then left my approach about 15ft left of the pin. Doink, and my putt hits the rim of the basket and falls short for a bogey 5. I bogeyed the Hypotenuse, the 8th (800ft, 150ft drop), birdied the 9th, and 12th but continued the Jeckle and Hyde golf that had plagued me since Sweden.

Like ball golf, a large part of this game is mental. Remain positive, think positive, forget bad shots etc. I’m just going to keep repeating the exhaustion excuse. It’s my own fault and in the end it didn’t take anything away from the trip, after all how lucky am I to even be here in the first place!!!

At the end of the second round I found myself in 18th out of 25 players. Pete was still holding on to second! I was able to get partially cleaned up using the cold water spigot and the soap and shampoo Mary insisted I take (I’ll have to thank her for this as well!!) Dinner was a BBQ (I broke down and had about 6oz of pork before Thomas alerted me to the veggie burgers!!). Thomas was a friend of Joe’s from Germany. Born and raised in Long Beach he graduated from UCLA and moved to Germany in 1999 to do support work for the Airforce. He was a pretty cool dude; he raised bee’s and harvested honey, was a vegan etc. A free spirit or modern day hippy would be the best description I can come up with at this point [included here with the utmost respect]. We chatted quite a while, he asked about the bracelets and I tried to give him the details. It was the same result as when I tried to talk to Joe in Sweden, I couldn’t get the words out. I told him enough that he understood what was going on but it was again way to emotional for me to talk about it.

By 10pm I’ve had enough, I can barely stay awake. I find my way into the one-man tent, take off my shoes and slide onto the air mattress. I think I fell asleep in less than a minute (just like home, right Mary?). 6 1/2 hours later I’m awoken by the sound of rain. It was light, more importantly peaceful like you could not imagine. I rolled over and slept three more hours finally getting up around 7:30.

As we rose Sunday it continued to rain. Fortunately I brought a nylon wind jacket that repelled most of the moisture. I made my way to the 14th tee. Actually we stood under the trees by thirteen with the sheep and the chaps that were playing in the group behind us. This group included Joe’s friend Matt. We teed off at 9:00am and as we played the first hole the rain stopped. By the time we finished our 5th hole we were playing is shorts and t-shirts again. It turned into a beautiful partly cloudy day. For me, the sleep paid off, I carded an eight over 65. This was good enough to move me into 10th place. Pete, played good enough to retain fourth place.

We had planned on leaving about 2:00pm in order to get Joe and Matt back to Heathrow for their flight to Paris. The top five players in each division go on to play a 9 hole final, this was to begin at 1:30. Pete was about to inform the tournament Director that he was unable to play when Joe garnered a ride with an English bloke he’d played with earlier in the day. A quick good-bye to Matt and Joe and Pete and I made our way out to the 10th tee for the final 9 holes.

Except for a few long delays for ‘rules’ determinations, nothing eventful happened in the finals. Pete was able to hold his own and finished quite impressively in 4th place!

Pete and I returned to Heathrow taking a route that took us through South Hampton and about 15-20 miles north of the southern coast of England. It was a relaxing drive as we listened to the BBC broadcast of Tiger Woods winning his 11th major, the other British Open. There was a lot of weekend traffic headed back to London and we were parked on the M3 on several occasions for 20-30 minutes. By the time we returned the car and got back to the terminal at Heathrow it was after 9:00pm. Pete found us a place to stay but by the time we dropped our bags and walked to the Pub/Tavern they had stopped serving food. A few pints of Guinness, a quick shower and it was lights out by a little after 11:00pm. The bed could have been made of nails, it didn’t matter. 8 hours of sleep later and I felt a little more like my old self.

We arrived at Heathrow by 10am even though our flight didn’t leave until 2pm. We found an internet terminal and used the time to catch up on email and I believe I even posted an entry here? Our flight was 2 hours late departing because they had to return to the terminal and allow a sick woman off the plane. New rules require that is a passenger departs, so must their luggage. Being that we were on a 747, this took quite a long time to complete. So even before we took off Pete and I are freaking out. Were we had built three hours and forty minutes time in order to get from JFK to LaGuardia, we would now have about ninety minutes. We would also now be required to go to luggage area after the rude female drill sergeant from Virgin made us check our luggage. I did my best to find things to occupy my mind; ‘King Kong’ and ‘16 Blocks’ took up almost 5 hours. The former was terrible on a 7” seatback screen, the latter was your typical Bruce Willis flick, though slightly more entertaining.

Our flight departed LaGuardia at 7:40, we got off the 747 at 6:00. Immigration was a breeze and we were at the luggage carousel by 6:10. At 7:00 our bags final came off the conveyor belt! Forty minutes left….no possible way we would make it. However, thanks to a great cabby, Pete’s impersonation of OJ through the terminal and the wonderful folks at Midwest Airlines we made it.!!! I walked in the house at 10:59pm, did some laundry, took a shower and was off to the Lake 7 hours later. The Lake…..well that’s a whole other story!

EPILOUGE
And so, this journey like all journeys, must come to an end. Was it worth it? That’s a hard thing to try to evaluate at this point. From a disc golf sense, hell yes it was! We played almost 200 holes of golf in 6 days, on three spectacular courses, we met some really, really good people that we all hope to see again here in the states one day soon. We saw so many things that many people are never fortunate enough to see at all; I thank God once again.

From a personal sense it was good to get away from Cancer. I thought about it a lot less than I normally do and for long periods of time not at all. There were several times when it came up and as I mentioned previously, it was too emotional to discuss. Looking back, it was the thoughts of Mary and Brad that weighed so heavily on me at those moments. I missed them; I wished that they were with me. I really think we were so busy all the time and so taken in by our surroundings and the golf that I was able to forget, if even just for a little while. That alone made it worth it.

Finally, Pete – I could thank you a million times for allowing me to tag along, to intrude and that wouldn’t be enough. Fate brought us together 7 years ago, it’s hard to believe a lifetime of memories can be stuffed into seven short years. While at Rockhurst, each Saturday morning on the course, through all the other BS that has happened in your life and mine and finally while on this trip. Mary is my soul mate, you are and will always be my friend, compadre, my mate (in the British sense) and I love you like a brother. I thank God this evening for your friendship. Let’s do it again next year, but perhaps this time we can stay stateside….I read that Wisconsin has 88 courses, the same number as Sweden!!!