On September 11, 2006 my PSA reached an all time, post-treatment high of 83.97. This year so much is different. Tuesday’s test results are in and the number is: 20.8. This is up a little from the last number I posted but not much of an increase since my last test.

Let me explain. The last number I posted was the 16.96, taken on August 2nd. However, four days later I had another test, due to a mis-communication with the lab. The result of that test was 19.25. This just goes to show you how much PSA can vary in a short period of time.

So, back to Tuesday’s number…I guess my last post reflects my response; whatever.
Not that I am not concerned – I am, but my number had pretty much not changed since January 2007. Great news if I do say so myself!

Historic numbers:
Date: PSA:
9/4/07 20.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.4
51/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]12/15/05 7.1811/03/05 4.64 (Stopped taking Casodex)9/22/05 0.808/11/05 0.35
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)Pre-treatment test:
2/?/05 219
Original test:
12/?/04 189

An update on the 3rd annual FLHW Golf Tournament, we are sold out! Although we continue to accept donations from Sponsors, we do have a full field of golfers! Next year we are planning to expand the event to morning and afternoon tee times to accomodate the number of participants. What a wonderful thing! Our goal for this year’s event of $25,000 was lofty, I think we might just make it!

Results of yesterday’s monthly visit to the Oncologist; “whatever”. That’s just the way I feel this month. Though I don’t have my PSA number, yet, the discussion with Dr. H resulted in the same conclusion…..keep on keeping on. I think he has done some research recently. He mentioned a few future options that we had not discussed before but were notated on a document Mary and I left with him last month. One being DES or estrogen patches. This was the standard treatment before androgen deprivation therapy (my current regimen). It’s not ideal but what part of this is? It’s another step to avoid chemo, however, there are issues; before beginning DES, I would have to have radiation to my breast to avoid growing “man-boobs”! Yes, you read that correctly. There have also been incidents of heart congestion, but apparently aspirin or Coumadin can address this concern. The heart side effect is not so concerning to me as it more than likely relates to the average age of men typically taking this path.

Needless to say, these are all future options. Mary and I agree with the doc that though my PSA is high, relatively speaking, it has hovered between 16 and 20 for months now. Also, I am experiencing no pain or adverse side effects. He convinced us that barring a month over month doubling, we would still need to see three or four months of substantial PSA increases in order to take the next step.

Again, my mood is…..whatever. Should I be so blasé?

Yesterday at Mass I was emotionally stopped in my tracks. There is a three year old little boy, who has cancer. I believe radiation and chemotherapy.

Yesterday was the first day I had seen him since I learned of his diagnosis. He had “the look”; no hair, scars from apparent surgeries, etc. These medical procedures however had no apparent impact on him yesterday. Here was this child, playing kissy face with his mother, happy, content and smiling. He was oblivious, at least at that point in time, of the disease that afflicts him. In fact, there was an essence of joy and contentment about it. I cried for him then, I cry now.

In my silent prayers at Mass I told God I’d trade places with him. Forty-four years may not be a long enough time to live, but three certainly is not.

And so, as I look ahead, I have to remember that moment and use it for strength during the tough times.

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Below is a message posted on one of the message boards I monitor. It is from the daughter of a terminally ill man in April 1996. His comments are in quotes. Pay attention to the first sentence of his quote. This is what I have been trying to say for a long time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I want to follow the thread on the endgame a little. My dad, age 76, is at the endgame after first diagnosis with Pca in 1988. The disease is hormone refractory and he has suffered a pathological break of the pelvis from the cancer. He is currently on no medication and actually says he is not in as much pain since the break as before. His PSA when last reported several months ago was greater than 900.

His response to the broken hip was to get out the walker we had earlier for my grandmother and rig it up with a bicycle basket. Initially this allowed him to help my mother around the house by setting the table, etc. When I’ve spoken to him by telephone the past few weeks, he tells me of how he has been out with his walker, a bucket of grass seed balanced in the basket and that he has been sowing the lawn. Last week, with his walker, he was out fertilizing azaleas that he will probably not see bloom again. His spirit amazes and comforts me. He wrote the following recently–and perhaps he can go more gently into that good night than one who is younger and who has young children of his own:

“Sudden, unexpected death simply terminates one’s life, but death on the horizon takes on meaning; it forces one to try to wrap up one’s life and bring it to a fuller and richer completion. My pending death, although frightening, especially when first confronted, has become an important part of my life. It keeps my life in clearer focus. Every day becomes more precious and I hope more fully lived.

My consciousness has been raised and my love deepened; the world has taken on a new splendor. While all of this makes life more attractive and whets my appetite for more time, it makes death a source of meaning that redeems it somewhat.”

Of course the devil is in the dying and the wrenching and tearing of the lives closely woven with one’s own. It is my hope that all the suffering involved in and occasioned by my death will be turned to some good — that, for all of us involved, our sense of values will be clarified and our humanity will be purified and shine more brightly as we embrace and strengthen each other… There are blessings to be found even in dying and the loss of a loved one, if we are open to them…”

Sycamore Summer
8-13-07
(On plane on way to Philly)

A summer breeze,
traverses the sycamore leaves,
they strike up their song,
on a harsh, dry day.

The mid-summer sun,
burns with intensity,
the ground below,
vast, dry, thirsting.

Through a parallel path,
we wait for reprieve,
theirs comes in rain and cloud,
mine through blood and vein.

We both live in cycles,
theirs measured in annum’s,
mine being shorter,
just four treacherous weeks.

A soft summer wind,
kisses the sycamore leaves,
a song strikes my ear,
hope touches my heart.

I’ve been exchanging emails with a man in a town about 80 miles east of here. He’s young (mid-40’s), advanced stage, young kids, etc. , a VERY similar prognosis – I just have a two year jump start on him.

Today he sent a few photos of himself and his daughter. She races sprint cars at tracks in mid-Missouri. That is pretty cool. However, I looked at the photos and thought about what he might be going through. It made me cry. Welcome back to the office, welcome back to reality!

On one hand, the pride he must feel in watching her perform is apparent. However, the fear that grips him about PCa, and the future is equally apparent, at this time, perhaps more prevalent?!

I sense he and I will converse more…….

I’m writing this at 33,000 feet on my mobile phone, returning to Kansas City from a business trip to Philadelphia.

This Saturday is a big day, it marks two and a half years or thirty months post diagnosis! As my friend David likes to say ‘that’s a big damn deal!!’

Being on a plane and without internet access I am not sure where this places me in relation to the ‘average’ man diagnosed with metastatic or advanced PCa? Frankley, we never really cared.

From that dreaded day in 2005 in Dr. D’s office we have never approached this like my case was average.

Sometimes, like when Lupron/Casodex only worked for less than a year, we were on the wrong side of average. However with my current regemine, we’re still seeing results three times longer than average. How does the saying go? ‘There are lies, damn lies and then there are statistics? Or something like that……

Each month, each step of this journey has been a learning experience. I have met some absolutely wonderful people. I have grown closer to those around me (both family and friends), closer to God and I have changed, wow have I changed!

Just go re-read entry #1 (February 2, 2005). Not only is my tone different, my attitude, my outlook and more have changed as well. Yes it’s true I know so much more about PCa now than I did back then, but I have to honestly admit that I am more positive tonight than I have been
in months.

Cure? I said I was feeling positive not that I was feeling crazy! That being said, at 30 months I’m feeling like 60 months may just be a start……you never know?