Another test, unrelated to this "Big C"

Just a quick hello because nothing is really new. We had a whirlwind weekend! A lot of activities each day including a major league soccer game, bbq, fishing, hanging out in "the country" and capping it off with "Chitty, Chitty Bang Bang". One of my favorites from my youth. I remember having a little die cast Chitty, it even had a button you could push to let out the wings!

Though I didn't make it yet, our neighborhood pool is open and I'm looking forward to many evenings and weekends down there with Brad.

Tomorrow I have to go visit my general practitioner. I met with him back in late April because I had a real strange spider bite that wouldn’t heal (has now). He conveniently reminded me I had yet to schedule my follow up colonoscopy. I don’t think I shared this information in this forum, but in the midst of being diagnosed with prostate cancer in January of 2005, I had to have a colonoscopy. It is a nasty little procedure whereby you have to starve yourself the day before and then ingest large quantities of diuretics. (Tonight should be fun!!!) With your stomach, and everything south of there, cleared out, the doctor proceeds to examine you from the rectum to the colon. It is such an enjoyable experience that they sedate you so you don’t remember any of it!!! Last year they removed 3 polyps that were pre-cancerous and this is just a follow up.

I could eat my desk right now I am so hungry!

Wish me luck tomorrow….I can’t wait!!!!

David earns a summer hall pass!!!

We just left the Oncologist (We really like her, hope you don’t get tired of me bragging about my doctor’s but we are VERY lucky), anyway, back to the story at hand……it went awesome!!!

We went over the tests from last week:

- My testosterone is down to 12 (normal is over 240ish). This means the Lupron alone is working but somehow those little cancer cells continue to push my PSA up.

- The bone scan showed my back, neck and shoulders remain clear. The areas in my right rib cage showed additional improvement from December, while the areas in my hips remain constant (“unremarkable” is the term the radiologist uses, kind of a cold term to use, don’t you think?!)

- The CT scan showed no lymph node activity. There had been a small abnormality they noticed on my liver back in December. The doctor was not concerned and it was clear on these tests. She believes it was just a blood vessel - not cancer related.

- We agreed that the next thing to do is to try the Casodex again and attempt to continue manage the cancer with the Hormone Deprivation Therapy. Our goal is to get the PSA number to head back down to 1 or less from the current 11.37.

The best news is that Dr. S. said that I should wait 60-90 days before I have a PSA test again!!! So I’m free until August!! We will schedule my next PSA blood test for mid-August and then have a follow up appointment with the Dr.

The one thing the readers of my Blog can count on…..not so many updates in the next 90 days. I am going to do my best to think about ANYTHING but Prostate Cancer!!

I’m off to play golf now, and then disc golf in the morning. I am looking forward to a visit from my younger brother from St. Louis over the weekend and a “surprise” from Mary on Saturday!

Have a great week-end and remember:
When the world says, "Give up," Hope whispers, "Try it one more time."

Another visit to emotional triage

We made it through another rough spot. The nurse called today with the results of my bone and CT scans. She had good news.

The bone scan showed "slight improvement". The CT scans showed that my lymph nodes remain clear, but there was a little area they notated regarding my right hip. All the details and the specifics of my hip will be discussed on Friday when we meet with the Oncologist. Perhaps the notation on the radiology report might account for the recent pain in my right thigh?

As we hoped, I started Casodex again today. I guess I can looked forward to less testosterone and more hot flashes. If that's what it takes to get my PSA back down, I gladly welcome the side effects!! Now where did I leave my Chillow?

The past week has been another trip to the emotional ER. We both have been stressed beyond belief, very similar to what we experienced in December. Perhaps reading another bad poem I wrote the other night will give you some insight into where my head was at:

Curl up and cry,
it’s not time for me to die,
so much more to do,
so many new people
and places to see.

Life is so unfair,
so much time spent,
living without a care,
when tragedy comes around,
no sense of it can be found.

I pray each day,
more and more.
Time is passing,
both of us by.
I fall asleep as I cry,
it’s not time for me to die.
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From the bottom of my heart, I thank you for all the thoughts and prayers - you got us through another bump.

Suns and Moons

I am not sleeping very well again. Stress, worry and hot flashes make a wicked combination. The hot flashes wake me and the worry and stress keep me awake.
“Are you awake?”
“Yes”

I’ve also had a recurrence of a few aches and pains over the last week. These have not been experienced in some time, maybe last fall? Nothing severe and nothing that warrants Aleve or Advil but occasionally my left thigh and ribs emit a VERY minor pain. It comes and goes and as of yet is not an issue, I just thought I’d share.

Friday’s meeting with the Oncologist seems like months away……

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Thanks to the world’s best wife, I was able to play disc golf both Saturday and Sunday. Saturday was brutal, strong winds and 15 of 18 holes being set in their longest position made for a long, long morning. Mary heard me complaining about it not being much fun and she said “Why don’t you play tomorrow?” She insisted, so a few phone calls later and we had a foursome!

We played what is perhaps Kansas City’s best and possibly most beautiful disc golf course. Water Works Park sits just north of downtown. It is very hilly has a lot of older mature trees and several holes have stunning views of downtown Kansas City. I was able to reverse Saturday’s disastrous round and card a three over 57! It was a glorious morning and played fast enough that we were home having Mother’s Day breakfast by 10:00am!

From my friend Pete, source of quote unknown:
“There are a lot of dandelions out there”
“Yes, suns and moons”

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I was even able to finish a small repair project on a few of the windows on the house, and then the family came over for grilled steaks and salmon. The filet mignon looked very, very appetizing but I was able to restrain myself once again!

Today I’ll be playing “ball golf” in a fundraiser for the Boy Scouts of America. It’s supposed to be rather cool for this time of year (64) but none the less, any day out of the office is a good one!
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This was just sent from a friend. Though my faith is growing daily I am not very well educated in prayers. I am trying to find more and more that are appropriate, this one hits so close to home, I had to share:

St. Theresa's Prayer

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of you

I just can’t think of a clever title for this one?

I had almost forgotten how much I dislike that whole process. Check in, early, what’s the point...they are never ready.

Wait, 5, 10, 15 minutes past your scheduled time, your name gets called. Follow the nice lady back to have an IV stuck in your arm.

She injects some type of imaging fluid and sends you off to see the fine folks in the CT Scan department.

Next, drink 32 ounces of “lemon-lime flavored” substance, wait 45 minutes. Drink 12 more ounces, wait another 45 minutes. Drink 12 more ounces and you're ready to go. I am however, very thankful for the advancement in imaging technology. Instead of the machine you see on television, this CT scan looks like a giant donut. You lie on your back on a very uncomfortable table with your arms above your head and wait for the iodine injection to start. Then the table slides back and forth so the “donut” scans your body, just the torso and hips in my case. This whole process takes about 20 minutes. Then there is an hour or so to wait for the bone scan.

The bone scan is like a giant x-ray table. They lower the upper “plate” to about a centimeter from your nose and then it begins its slow descent towards your toes. This process again takes about 20 minutes. I always keep my eyes closed for the first 10 minutes or so until it completely reveals my head, that way I don’t get a sensation of claustrophobia. Total time in the imaging center, almost 4 hours.

When I had my last bone scan in December I was able to see the results on the monitor. This time the technician closed the file before I could see the images. I’m not sure I should read anything into this but with my PSA number rising, I’m not sure?

Mary, of course, was there through the whole process. By my side when they’d allow her, in the waiting room when not. Neither of us had eaten all day and we didn’t finish until about 3:15. We stopped in Panera and literally gobbled down a late lunch. Mother’s Day couldn’t come sooner for her. She’s the best! I’m not feeling too verbose at this time, but I’d be no where without her.

I remain blasé about my current state, not depressed, just blah. It is going to be a long, slow week until we meet with Dr. Sheehan next Friday. I did receive an email from my Urologist and he indicated that Casodex would likely be the next step, however the x-ray’s and scans will reveal a lot.

One thing that will surely make the next week pass by quicker is disc golf tomorrow, a charity golf event on Monday and another next Friday afternoon. I have to find time to Mother’s Day shop tomorrow and get to the driving range so I don’t embarrass myself on Monday.

To all the mothers out there, Happy Mother’s Day!!!!

Comfortably Numb

On the Pink Floyd album “The Wall” there is a song titled “Comfortably Numb”, it begins with:

Hello?
Is there anybody in there?
Just nod if you can hear me.
Is there anyone at home?
…….

Relax.
I'll need some information first.
Just the basic facts.
Can you show me where it hurts?

So here are the facts: my PSA number now stands at 11.37

So where do we go from here? Perhaps as a first step I’ll go back on Casodex to see if by cutting off the source of the ten percent of testosterone, my numbers will come back down?

I pray that’s the direction my Oncologist suggests. The other choice, the one we almost delved in to a few months ago is not pretty. Chemo. It’s such a nasty, nasty word.

Here I sit wondering, what the hell? What’s next? Will this nightmare ever end? I just want to wake up and have it just be all right…..

Back to the song……
It doesn’t hurt – I am nodding – the facts are the facts and that is what really, really is hard to accept right now…and so I am….comfortably numb.

The Bait and Switch

Looking for a little light hearted entertainment, we rented a few movies over the weekend.
A little background and opinion. I think the majority of movies produced today are garbage. One reason is they usually contain language and innuendo that are totally uncalled for and add nothing to the plot or value of the movie. Is it a requirement for a script writer to include a minimum number of curse words in each film? As a parent of a nine year old boy, we find it extremely difficult to find movies that we can watch as a family (animation aside).

First up was "Last Holiday" starring Queen Latifah. This was semi enjoyable. It's easy to get some satisfaction out of movie when you set your expectation level low. The premise is that she gets mis-diagnosed with a rare brain tumor(s) and has three weeks to live. Consequently, she lives like she's never lived before. It was a lighthearted, whimsical movie (OK, I stole that from a review) and it was entertaining enough for the whole family. It had a happy ending, so we figured Brad would enjoy it, and he did. Language is the primary reason for the PG-13 rating, go figure.

Next up was "The Family Stone". Again, we weren't expecting much, but we weren't expecting this. The preview/trailer mentions or suggested NOTHING about Diane Keaton's character. As it turns out, she has breast cancer, and she dies! No, we did not watch this with Brad. Mary and I had been forewarned but it obviously hit way too close to home and hence, triggered some emotional repercussions. It was a good thing though. Mary and I have been keeping a pretty stiff upper lip for the better part of a year, an emotional release was needed for both of us.

In the end, after getting over the bait and switch issue, I feel fine about the whole incident. We can’t hide from what is going on. We can't suppress our feelings and our fears and if it takes a really bad movie to trigger an emotional reaction, so be it.

I'm learning more and more everyday about cancer, about life and about people in general; there are no rules, there is no blueprint. You just have to keep rolling with the punches. Don’t get too down from bad news or too high from the good, just live somewhere in the middle…..emotionally, it might be the safest place to be.
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BTW - I had my PSA test yesterday, not last Friday. Results should be in today or tomorrow.
Friday 5-12 I will have a Bone Scan and MRI
Friday 5-19 We will meet with my Oncologist to review all of the test results

UPDATED: The list grows, not a good thing

Mary found the blog of a man (John W.) who, also in his mid 40's, has advanced PC. John is from Lethbridge, Alberta in Canada. The interesting thing about John is he is about to embark on a bike ride across Canada! (www.cycleforlife.ca). We haven't talked yet but it appears our battle is the same and our desire to increase awareness is the same. Go check out his site (I've added a permanent link to the right), he leaves May 15th and could use all of our support.
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A co-worker approached me yesterday and told me her 62 year old uncle had just been diagnosed with advanced PC (unfortunately the list continues to grow….) She indicated he wanted to talk, I told him to call tonight, updates to follow.
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I spent over 45 minutes on the phone yesterday being interviewed by a writer for Men's Health magazine. They were looking for stories about men who received second chances. It was encouraging to know my story and desire to increase awareness might actually make it into a national magazine. Apparently the story will tentatively run in the October issue (on news stands in September). It’s not about me, the article will consist of a number of profiles including regular guys like me along with celebrities (Politicians, entertainers, sports stars etc.). Though the writer seemed sincerely interested in my story, we'll see if I make the final edits. I'll keep you updated if I hear anything.
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Tiger Woods father Earl passed away today:
"My dad was my best friend and greatest role model, and I will miss him deeply," Tiger Woods said on his Web site. "I'm overwhelmed when I think of all of the great things he accomplished in his life. He was an amazing dad, coach, mentor, soldier, husband and friend. I wouldn't be where I am today without him, and I'm honored to continue his legacy of sharing and caring."

Woods was diagnosed with prostate cancer in 1998 and was treated with radiation, but the cancer returned in 2004 and spread throughout his body.

St. Peregrine Day

Today is the memorial day of St. Peregrine, the Patron Saint of cancer patients. The background on St. Peregrine and prayer are available by clicking on his name above. I didn’t grow up Catholic so the concept of "saints" and prayers dedicated to a specific saint for a specific reason is relatively knew to me. There are saints they are here to help as with just about everything.

As it relates to cancer, St. Peregrine has provided me with a considerable amount of strength. Primarily at Mass, but also at other times, I find myself saying silent prayers to him. I'm not expecting a miracle cure, but I look for strength and guidance, nothing more. Longer term, you just never know… ( a miracle would be greatly appreciated!)

Right after I was diagnosed, a friend gave me a prayer card and a St. Peregrine medallion on a chain. I carried the chain/medallion in my pocket at all times, I was never without it. At Mass I would wrap it tightly in my hand and say silent prayers. On our way back from Florida in March, I lost it going through security. I prayed to St. Anthony to help me find St. Peregrine but it was apparently a lost cause. Mary has since replaced it, but there was something sentimental about the original.
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A friend at work is having surgery this week. He's 47 and has to have some work done on a valve in his aorta / heart, it sounds like he is basically having open heart surgery. He remains in my thoughts and prayers, please try to find time to add him to yours.