I apologize for they delay but Monday was a whirlwind and things are finally winding down. It felt to both of us like a wedding reception. Old friends and new, co-workers from the past and present, family… it was all quite overwhelming. There were so many people I saw that I wanted to spend more time talking with, but we just ran out of time. In the end it appears that through the help of family, friends and complete strangers, we can accomplish almost anything!

Strangers are friends you have yet to meet.

Call it a clan, call it a network, call it a tribe, call it a family: Whatever you call it, whoever you are, you need one.

Regarding the last; I personally consider everyone who helped, sponsored, donated, played, etc. part of MY clan. You have my deepest appreciation. Your support means more to me than you will ever know.

The tournament was an incredible success, and we have received many compliments. We hope that each participant had a great day out at the course. We had almost 120 golfers and beautiful weather throughout the day (just a little warm, but definitely bearable). At this point we still have a few checks to collect and several bills to clear up, but it looks like we be able to exceed our goal of making a $10,000. donation to PCF to support research for advanced PC. It’s hard to believe that all of this came together in just under four months. We owe a debt of gratitude to the FLHW Board, Rich, Mark, Steve and Chris. Additionally, special thanks goes to the many volunteers who helped keep everything running smoothly throughout the day.
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…and so, with very little sleep, we had an appointment on Tuesday with a radiology oncologist, Dr. Smalley. I have been having back pain at the end of most days and wanted to check in with an expert. We got lucky again and found a great doctor. He was personable, highly intelligent and most importantly ~ HONEST. We spent almost an hour with him discussing both my case and his approach. To summarize –
1) He was supportive of the dietary and exercise regimen [and somewhat envious]
2) He was willing to administer radiation treatments to my back and was 100% sure they would help, but was cautious about playing this card to soon. He also wasn’t 100% sure there is a correlation between the pain and the cancer, based on my description of the pain and a few test he administered. He suggested for now I begin taking Advil, as it has been effective in relieving the back pressure.
3) We discussed the hot flashes at length and there are a few FDA approved drugs that can address this symptom.

We are going to discuss further with Dr. Davis before moving forward. (One of the drugs is Prozac ~ it is a milder dose than what is normally prescribed and would have no effect on my mood, being that I’m a pretty happy person to begin with ~ however, just the idea of another drug leaves me a bit reluctant.) My next appointment with Dr. Davis is in 3 weeks, when I am scheduled to receive my next Lupron shot and will have another PSA test as well. We pray that the PSA # will resume to a lower level.

That’s it for now……

I saved a bunch of money on car insurance by switching to Geiko!
OK, just kidding, but humor is an essential part of dealing will all this….

On a serious note, not that I ever had an issue with blood pressure but mine was the lowest ever yesterday morning, 126/66!

Dr. D called me back yesterday on my way home, here is the synopsis. First, no need for panic at this time. Intermittent spikes in PSA levels do happen from time to time. There is no need to change anything we are doing for now. However, if the next two readings are also up, then we will begin to make some changes. First I will stop taking Casodex (the daily hormone blocker that only stops about 10% of testosterone production). Though this sounds wrong, Dr. Davis has said that in similar cases allowing your body to produce/release small amounts of testosterone can actually bring the PSA back down again. As always, he was VERY positive about the current situation.

My general practitioner recommended a new doctor yesterday. He is a radiation oncologist (Dr. Davis knew who he was). I hope to see him next week to discuss the back discomfort I have and just to get another opinion.

And now for more good news: the golf tournament is sold out! We could squeeze in one or two players if they show up on Monday, but at this point it looks like we’ll have 32 teams! As I’ve previously mentioned we had hoped to raise $10K, it looks like we should exceed that without an issue. As of today, the forecast looks like 81 and sunny!
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Emotional strength is just your mind reminding your body who’s in charge.

It’s been a hectic morning with meetings etc. and I have a very important meeting in 90 minutes so this update will be brief.

This morning I received the results of my latest blood test (taken last Thursday) and my PSA number went up slightly (from .35 to .80). Though I know this is not good, I am not sure how significant/bad this is? I hope to talk to Dr. Davis before the day is out, may be tomorrow?

Crank up the prayer chain…….

More information to follow as I receive it.

Thanks go to Jeff for sending this my way.
I like Tony Snow, he sent me an autographed picture last year, before this happened to either of us. He inscribed it with “Keep the Faith”

It’s not because of him, but there is a reason “Faith” is the first word in our foundation. You chose your own definition of what faith means to you, I again am not hear to preach. However, believe me, and read Tony’s article, when you hear those dreaded words “You have cancer”, the first place you turn, and the place you return to hundreds of times each day is to your faith.
You can probably tell from recent postings that this (fear) is THE hardest part for me personally. However, the good news is I spend far more time being positive. I know that I will live to see 50, and 60 and hold a grandchild….and all those other little things we have planned WILL happen!
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Fear is a waste of time
Tony Snow
September 16, 2005
WASHINGTON, D.C. — My doctor has tried manfully over the years to talk seriously about important health matters, usually with mixed success. But he really grabbed my attention when he called just before Valentine’s Day and said two little words.
“It’s cancer.”
People respond in different ways to such news. My first reaction was to think it was cool, in a bizarre way — as if I had been inducted into a club known not just for its danger and darkness, but also for promising survivors something precious and rare: a fuller glimpse of life itself.
That feeling didn’t last long. Within hours, the novelty dissolved and panic set in. My wife and I lay numbly in bed, fretting about what might be. A neighborhood friend had died of cancer only weeks before, leaving behind young children. We both thought, “What if … ?”
Meanwhile, I felt pings and pangs in every conceivable organ and extremity. I interpreted transitory pains as evidence that micro-tumors had begun spreading wildly throughout my body and were attacking with fiendish efficiency. At one point, I mistook normal, allergy-related sinus pain for a brain tumor.
Fortunately, this panic didn’t last long, either — mainly because I received a very important visit from a friend. She came over to our house, armed with books and advice. Lounging on the couch, she talked about how she survived simultaneous cancers of the breast, lungs and lymph nodes.
There’s nothing quite like a pep talk from a cancer survivor, especially one who by normal calculations ought to have died long ago.
Here is the most important thing she said: “When I was sick, my husband and I would sit in a group with other women who had the same thing. We sat in a circle, the same people each week.
“Some looked strong and vigorous; others were pale and weak. But none of that mattered. We discovered that we could figure out who was going to live and who would die just by looking into their eyes. The ones who were afraid didn’t make it. The ones who were pessimistic didn’t make it. The women who made it were the ones who wanted to live, and were ready to fight. Some of the big, strong women weren’t ready to fight.”
From that moment on, I haven’t felt a pang of fear or trepidation. My friend inspired me to stop acting like a passive nut-job, performing diagnoses based on toe twinges and random gas pains, and to get moving. Suddenly, I couldn’t wait to enter the hospital, where a terrific surgeon removed my colon, and then to undertake a six-month course of chemotherapy, complete with annoying side-effects and days of dreary exhaustion.
And so I did.
Winston Churchill once noted that there is nothing quite so thrilling as being shot at without effect. One can say much the same thing of grappling with cancer, with one difference: When a bullet passes, you know it. When cancer passes, you have to wait at least five years to mop your brow in relief.
Still, the last few months — my time of surgery and chemo — have been the happiest and most thrilling of my life. They have confirmed lessons that seem at once too good to be true, and too important and vital not to be.
Here is a short inventory:
Faith matters. Prayers heal. Love overcomes.
People want to do good for others; they just need excuses.
Fear is a waste of time. The worst that can happen is that we’ll die — which happens to everybody, anyway. Until the Grim Reaper comes knocking, we’re alive.
We can count our hardships, but not our blessings.
Life does not revolve around us. It envelops us.
There is no condition that someone else has not already overcome.
Nothing makes one feel more alive than the prospect of death and the requirement that one fight for the things that give life its richness, meaning and joy.
Seven months into my little adventure, I love my wife and children more than ever; relish my work more than I could have imagined; and feel joy that I cannot begin to describe. I also have some street credibility when it comes to counseling cancer patients. I now can do what my friend did: Dispense a little advice and encouragement, so someone else can replace fear with hope and anxiety with determination.
Which leads to the final healing lesson. When you find a good thing, don’t be selfish. Pass it on. You’ll feel better — and so will someone you love.
Tony Snow is the host of the ‘Tony Snow Show’ on Fox News Radio.

Here’s a story that I read yesterday. It promised some real hope. It is followed with another story from today, the bad news….

FYI – This is the stage my cancer will take when the drugs I am on currently, fail. Our hope is that this will be many, many years from now!!!

What a way to go, “Gallo died in 1994 at age 58 with only a morphine drip from his hospital IV for pain and the comfort of his wife keeping him lucid.

“The pain was so horrible there were times you could not touch him because he was in such agony…” ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Abbott’s new drug for prostate cancer will also take aim at pain
By Bruce Japsen
Tribune staff reporter
Published September 12, 2005

The spread of prostate cancer into her husband’s bones was enough of a battle, but Betty Gallo said her husband, Dean, also tried to fight debilitating pain in the last months of his life.

The congressman from New Jersey was unable to focus on his fight against cancer because disease had invaded his bones, a destination resulting in terrible pain for tens of thousands of cancer patients each year.

Gallo died in 1994 at age 58 with only a morphine drip from his hospital IV for pain and the comfort of his wife keeping him lucid.

“The pain was so horrible there were times you could not touch him because he was in such agony,” Betty Gallo recalls of her husband, who served 10 years in the U.S. House of Representatives. “I think you can focus more on getting the disease under control if you can control the pain.”

It may be too late for Dean Gallo, but a pill developed by Abbott Laboratories hopes to address the spread of prostate cancer while delaying the onset of pain.

A Food and Drug Administration advisory panel of cancer experts will decide this week whether the drug, called Xinlay, should be recommended for approval. The FDA typically follows the recommendations of its advisory panels.

For North Chicago-based Abbott, approval could mean up to $300 million in sales next year and eventually more than $1.5 billion annually, say analysts, pointing to studies that evaluate whether it can be used to treat other cancers.

Abbott believes Xinlay is a breakthrough that should merit strong consideration, especially because there are more than 2 million American men with prostate cancer. About 230,000 cases are diagnosed each year.

But the submission is unique and there are no slam-dunks, especially now that the FDA is under fire from consumer groups and lawmakers over perceived lax reviews of drug safety in the wake of Vioxx. The FDA approved Vioxx in 1999, but the drug was pulled last fall after a study showed increased risks of heart attacks and stroke.

“There has been some talk that because of Vioxx that sensitivities could be heightened,” says Michael Zbinovec, director of corporate finance and a pharmaceutical analyst for Fitch Ratings in Chicago.

“Clearly, [FDA and its advisory panels] are looking more closely at existing therapies, which is why you are seeing a host of new warning labels. As far as the approval of new drugs and what kind of scrutiny they will face, I think people have a wait-and-see attitude,” Zbinovec said.

Analysts expect FDA advisers to take a hard look at Xinlay, especially because the drug is trying to make a comeback of sorts. In 2003, Abbott halted a key clinical trial because the drug was failing to slow progression of the disease in end-stage prostate cancer patients.

But Abbott officials described that setback as an early-stage trial. The company says it now has more complete data and will submit to the FDA more recent studies that show the drug is promising in the sickest of prostate cancer patients.

Abbott sees the pain relief feature as an added benefit to slowing the progression of the disease.

“There is a bigger effect in pain than other clinical events,” said Dr. John Leonard, vice president of Abbott’s global pharmaceutical development.

The two primary studies being submitted to the FDA show the drug slowed the spread of prostate cancer and delayed the onset of pain in 20 percent to 30 percent of the patients who took Xinlay. Of patients who had cancer reach their bones, the onset of pain was delayed by as long as three months.

While that does not seem like a large percentage of patients, such rates of effectiveness often merit approval because prostate cancer patients often have few, if any, other hope for treatment, analysts say.

“Even if the drug only works in one-third of patients that would be a big step because 30,000 men a year die from the disease,” said Dr. Jerome Hoeksema, an assistant professor of urology at Rush University Medical Center in Chicago and immediate past president of the American Cancer Society’s Illinois division. “You could have an impact on 10,000 men or more. That is a significant number of men.”

Late-stage prostate cancer patients tend to be frail men who are about 70 years of age, and the next stage for most of these men is death because so few tolerate another round of treatment, such as chemotherapy, if they can handle any treatment at all.

Xinlay also is deemed important among clinicians, who say more drugs are needed for men with late-stage prostate cancer because they eventually stop responding to hormonal therapies such as Lupron, an injected drug sold by Abbott affiliate TAP Pharmaceutical Products Inc. of Lake Forest.

Abbott and some cancer doctors say FDA advisory panels look at cancer drugs differently than maintenance medications like arthritis or cholesterol pills because they can be the last hope for patients.

“When the disease progresses, we don’t have a lot of active treatments and are looking for something to take us to the next level after hormone therapy loses effectiveness,” Hoeksema said.

Xinlay is considered a more targeted therapy, which means it’s designed to be more convenient and less toxic to the body than traditional chemotherapy.

Xinlay’s side effects include runny nose, red eyes and fluid retention. “If you have a runny nose, it tends to go away,” Leonard said.

“Targeted therapies are the new frontier and the promise is great,” Hoeksema said. “Targeted therapies offer promise of treating the malignant cells without targeting the normal tissue, so the drug goes where it needs to work without exposing the whole body. It kills the cancer cells.”

~~~~~~~~~~~~~~~~~~~~~~~~~~
US FDA panel rejects Abbott prostate cancer drug
Tue Sep 13, 2005 12:23 PM ET
BETHESDA, Md., Sept 13 (Reuters) – Abbott Laboratories Inc.’s experimental drug, Xinlay, should not be approved for treating men with advanced prostate cancer, a U.S. advisory panel unanimously recommended on Tuesday.

The Food and Drug Administration will make the final decision, but the agency usually follows the advice of its expert panels.

Abbott shares fell as much as 99 cents to $44.24 a share just after the panel’s decision before regaining some ground to 83 cents, or down 1.8 percent, at $44.40.

Some industry analysts have forecast annual sales for Xinlay could reach $2 billion if the drug wins approval.

Xinlay is an oral, once-a-day drug that targets a protein called endothelin receptor A, which is believed to help cancer cells spread. The drug’s generic name is atrasentan.

Two studies of Xinlay failed to show the drug slowed progression of advanced prostate cancer. Abbott, however, said pooling data from the trials demonstrated Xinlay delayed the disease’s spread and reduced pain from the disease’s spread to the bone.

Things are becoming somewhat routine lately. Not a lot of news personally or cancer related to report. My next PSA test is a week from Thursday, seems like yesterday that I was just getting this done? I also have a follow up with my general practitioner in two weeks, we are going to persue another referral for a general Oncologist. Based on what we continue to read, we’re not confident that they are going to have any new opinions or options, but you never know. The hot flashes continue, every morning at 8 and usually throughout the night. I probably get 4-5 good hours of sleep a night, then I wake up between 3 and 4am. From then until 6am it’s tossing and turning between outbreaks of sweat! It’s about as enjoyable as it sounds.

Last week we celebrated a 9th birthday. It’s amazing how quickly he has grown up! Third grade and nine years old!!! Why is it when we are young, time is at a stand still and as we age it seems to disappear?

We did spend Saturday at the Great Wolf Lodge. For those of you who’ve not been, it is basically a hotel built around a lodge theme with a water park in the middle. It was great fun, and the kids enjoyed themselves as well!

The golf tournament is progressing. The field is sure to be full and the sponsorships are starting to add up as well. The generosity of strangers is an amazing thing to witness. The tournament is three weeks away and I’m looking forward to us topping our goal!

I started reading Lance Armstrong’s second book but have had to stop. The only time I can seem to find to read is right before bed. We’ve both found that if we read medical/cancer related books, prior to going to bed, it just makes sleeping very difficult.

I’m ready for Fall and a change of seasons and wardrobe, blue jeans, sweatshirts…cool, crisp nights…disk golf in the woods…fireplaces, football…

That’s it for now…..

I guess I’ll get to keep ordering those “skinny, grande, mocha’s with no-whip” after all!!!!

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Coffee is number one source of antioxidants

Reported by Susan Aldridge, PhD, medical journalist

A survey shows that coffee is the main source of antioxidants for Americans.

Antioxidants can help slow down age-related diseases such as heart problems. They’re found in fruits and vegetables and other plant products like tea and coffee. Researchers at the University of Scranton, Pennsylvania, now reveal the main source of antioxidants in the American diet – coffee!

They looked first at the antioxidant content of more than 100 different food items and then at the consumption of each by the population. Coffee turns out to be the number one source of antioxidants, being drunk by over half of the population each day. Although dates, in fact, are the food with the highest antioxidant content per serving size.

After coffee, tea, bananas, beans and corn are the main antioxidant sources. Other fruits and vegetables don’t figure enough considering they also contain vitamins, minerals and fiber. One or two cups of coffee a day will be enough to give beneficial amounts of antioxidants, say the researchers. The antioxidant content is about the same for regular or decaff coffee. Black tea would be equally beneficial. And dates, cranberries and red grapes are the top antioxidant containing fruits. Include these in your diet where you can.

Source

American Chemical Society meeting 28th August 2005″

One of my best friends, a brother in every sense of the word, lost his Dad yesterday. Though he had health problems, it’s still a difficult thing to lose a parent. For him, just another lousy hand in a year of difficulty. I’m with you brother, I’ll say many prayers for you and your family today at Mass. I ask the rest of you to say a prayer for them as well.

Next, I monitor an on-line support group for PC patients. Being that PC strikes older men, most of the participants are older men. Their problems are usually surrounding the terrible post-operative side effects. Issues like incontinence and erectile dysfunction (I never said reading this would be fun). Though I would trade place with most of these gentleman in a split second (short term – Depends and ED issues versus no cure……) On the other hand, being 42 the thought of wearing adult diapers…..frankly I just don’t want to go there….. I will add these men, these strangers, to my prayers today as well.

Tragic, fragile, limited, beautiful, funny, difficult, intense, lovely, limited…

It’s there, always. Not far away, waiting for the opportune moment to pounce right into my conscious thoughts. It’s fear.

While I struggle daily, hourly, sometimes minute by excruciating minute to remain positive there are times (more lately) that I just plain get scared. I know it’s normal and I should be, but I don’t want to be – I want to always be strong, always be positive and in the end, always be here. I’m not giving up. I never, ever will! it’s just every now and again BAM!

I started reading Lance Armstrong’s second book. I’m only 40 pages in but it’s good to know that he understands what his situation, and experiences and his stature mean to the rest of us. He hasn’t run from it, he’s run to it, he embraces it and understands it and it appears he will spend a good portion of his energy from this point forward focused on this cause. He sounds like a pretty cool guy, I’d love to leap off the cliffs into his swimming hole. (you have to read the book to get it)

Now there’s a conflict ~ I’m scared on one hand, but want to jump 45+ feet into a lake for the thrill of it!

1 Why?

2 Why me?

3 Why now?

4 Why this?

5 Why am I so lucky?

6 Why did we find each other?

7 I love her so much.

8 I could never imagine trying to get through this without her.

9 I amazed at the help total strangers offer.

10 Are we going to make a difference?

11 What will our son grow up to be?

12 Is anyone else scared?

13 6:00 is early

14 Why can’t I just sleep in

15 Why do I always put so much on my “plate”

16 A Saturday afternoon nap would be nice

17 How long will grandma hang on (she’s 99)

18 I wonder how many pounds of berries I’ve consumed since February

19 I want to feel sand between my toes

20 I want to watch the sunset over the ocean

21 I want to walk in the surf for miles……

22 I haven’t been to a concert in almost 20 years

23 Will the Kenny Chesney concert be good?

24 I think I went to about 50 concerts before I was 20 years old

25 The Mississippi River Festival

26 Will the Cardinals win the World Series?

27 Why are professional athlete such idiots?

28 Just over paid little boys

29 I’m looking forward to the NHL season

30 I want to take my son to a Chiefs game, but worry about the behavior of others

31 Are we to protective?

32 I love a good thunderstorm

33 Lightening is so cool

34 It continues to amaze what people will do to help, if you just ask

35 It continues to amaze what people will do to help, if you just let them

36 I miss my mom, I wish I had known her better

37 Is it too early to start planning a trip to Italy for next June-July?

38 I want to stand in Vatican square in silent prayer

39 I’d love to meet the Pope

40 I’d love to meet Lance Armstrong

41 I’d love to meet the President

42 I’d love to meet Michael Milken

43 I never really had “heroes”, though there were people I admired.

44 The list of people I admire is much different now

45 I really hope our golf tournament is successful

46 I want to make a difference, regardless

47 Is this Blog a weird way to share this experience?

48 I hope there is not a limit on entries, I plan to be writing this dribble many years from now

49 I wonder how many people have been tested as a result of this?

50 There is nothing….without hope!