I was at work when I received a call. A friend told me, “A plane just hit the World Trade Center! No, I think it’s a commercial airliner!”. I don’t remember much else about work that day, standing around, looking at the television monitor, wondering if they were going to do the same in KC, St. Louis, Chicago, etc.

Five years, I can’t believe how fast it went by and how much things have changed. The world is so different, my life is so different. Brad is twice as old as he was at that point. We shielded him from it, at five it was very difficult to explain why someone would hijack a plane and fly it into the World Trade Center, Pentagon and White House (where flight 93 was rumored to be headed). It’s hard to explain to a five year old…it’s hard to explain to a forty year old!

God Bless America
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I’m all but certain I fell into the mental trap of relating every ache and pain back to cancer. While the pain in my hip and into my leg was exaggerated by the cancerous cells in my hip, I believe it was caused by my overzealous attempt to exercise in St. Louis, by taking a quick run on my Dad’s tread mill. Since the pain flair Wednesday afternoon, I have taken it very easy. Not a disc was thrown over the entire week-end! I have only taken Advil twice since Friday and gave up the heating pad then as well. I worked out this morning from the waste up and played golf this afternoon. Although I was cautious, I was able to play and enjoyed the afternoon on the course. Lesson learned – I have to take it a bit easier. (Not an easy lesson for me!) We hope that when I begin the Zometa, the areas of bone that are compromised by the cancer will be filled in and strengthened. My first infusion will be on Monday, September 18th.

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.

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 night’s 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 tomorrow’s 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.  I’m not sure why but I’m less concerned about chemo than radiation?  It just sounds nasty?!

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!!!

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?

“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).

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……
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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

So I get in my car after work, I’m 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 I’m pretty darn ticked off at this point.

Of course I’m 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. We’ll 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 I’m 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!!) I’ve never met him but it’s my guess he’s one heck of a kid!!

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

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.