May 29, 2007

Wondering out loud

Today I received an email that reconfirms what my original purpose was in creating this blog. I am thankful that it is a source of information, as well as support to those afflicted with prostate cancer. It is making a difference, and in this case it is impacting someone half-way across the globe.

I received an email this weekend from someone in New Zealand. It is amazing that although there is a great physical distance between us, we have much in common. This person received a similar diagnosis as I initially did, but what struck me was that this person was given a time line. '....hope to last longer than the 6 months the doctor gave....'.

I imagine that as a doctor, when a patient asks 'how long?', that there is some sense of obligation to respond with an answer. What I don't understand is where do the estimates come from? Is there some medical matrix where the variables are calculated, including a reference to the age of the patient, age, diagnosis stage, etc.? Where or how would such a matrix account for one's mental situation? Physical condition? Ability and desire to beat the cancer? Once again, I so respect my urologist. The day Mary and I sat in his office and he explained to us that I had Stage 4 cancer and that there was no cure, he never provided a timeline. He clearly explained the recommended treatment strategy, (hormone deprivation therapy), outlined the potential side-effects and encouraged us to pursue lifestyle changes (diet, exercise) that would additionally get the cancer under control. He told us that he could give us a timeline but didn't want to, because frankly, he believed we had the right attitude and determination to beat the odds. Although he could not offer a cure, he was ready to help us fight this disease and manage it into old age. As frightened as Mary and I were on that day, we felt his support and most importantly, we felt that there was hope!

I repeatedly read that with a cancer diagnosis, 'no two situations are the same', then why offer a diagnosis or guide one patient based exclusively on statistics of others?

The intention of this post is not to offend anyone in the medical community. I am sincerely thankful for the wonderful, skilled medical professionals who dedicate their careers to help others in need, especially those helping those of us with advanced prostate cancer! I'm just a guy, a guy wondering out loud.

[leg update: sleeping better, back to work, no pain pills since Thursday!]

May 25, 2007

Das Boot!!!

Now that you have recovered from the shot of my sexy knee, how about the size of that boot!

Though Wednesday night was bad, I had a great night of sleep last night (mostly due to Mary's return from DC). Just imagine trying to get comfortable enough to doze off with this thing strapped to your leg!

This is day seven on the sofa, and my butt is numb! I have been doing as much work as possible from here but plan on going back to work on Tuesday.

Here's to a wonderful, relaxing Memorial Day weekend!!!!

May 23, 2007

66%, close enough

So it's two fractures, not three. Also, both are in my fibula (smaller, non-weigh bearing leg bone).

The third fracture was from a basketball injury 12+ years ago and apparently nothing to worry about.
They removed the temporary cast and I am now sporting a boot that looks like something the bionic man would wear.The good news it the boot is held together with Velcro so I can take it off and shower!!

I have to keep this on for six weeks and use crutches for the first four weeks. There goes my golf game(s)!I have a follow up x-ray in two weeks to make sure everything is setting correctly.

That's a quick update, back to the sofa!!!

May 20, 2007

The ankle bone is connected to the.....

Actually, the ankle connects to the tibia and fibula. You know how I know that? Well, when the ER doctor was showing me the x-rays yesterday morning he pointed out the fractures I sustained in both my right tibia and fibula.

It all happened so fast. Yesterday at 3:00am I got up for usual middle of the night bio break. I turned to go back to bed, my ankle didn’t and with the help of all my body weight, I went down like a sack of potatoes!

With the assistance of a pain pill I was able to get a few hours of sleep but by 8:30 Mary and I were headed to the emergency room. The x-rays showed three fractures so the staff put a temporary cast of my right leg and off we went.

I have to schedule a follow up with an orthopedic specialist later in the week to determine if a walking cast is an option, or if surgery is required. The latter is a long shot according to the ER doctor. I’ll let you know when we find out sometime Thursday or Friday.

If it’s not one thing, it’s another…..

I've sent the last 30 hours on the sofa emptying my DVR of practically everything I've recorded over the past few's getting empty. Seen any good movies lately?

May 18, 2007

All kinds of things....

First and foremost, Mary and I attended the visitation for Theresa . I didn't even shed a tear. I felt very sad to say goodbye, but yet I couldn't she a tear. I wonder if there is something wrong with me? Glad mary was there ....Yes it was sad, I was sad but I couldn't shed a tear? What's up with that?

Her family needs a break, God, are you listening , I'll keep them in my prayers!
Here is a fantastic movie for you to watch, even if you aren't a golf fan:
"The Greatest Game Ever Played" It's a true story Francis Ouimet, an amature who won the 1913 US Open.
Information from the 'Internet Movie Database" IMDB
Information from Wikipedia on Francis Ouimet
As for the topic at hand, Prostate Cancer, it seems a day doesn't pass that there isn't some contradictory news about foods, vitamins and minerals that may or may not be beneficial. The latest causality is lycopene obtained through the consumption of cooked tomatoes. I told Mary to keep making her homemade roasted tomato sauce. It has to be good for me and it’s delicious! One of the stories, from WebMD is below.

I'm still doing my best to include the following in my diet:
- broccoli
- pomegranate juice
- turmeric (powdered)
- green tea
- along with fish, and a wide variety of fruits and vegetables!

Study: Tomatoes Don't Prevent Prostate Cancer
Friday , May 18, 2007

The news that tomatoes could prevent prostate cancer sounded too good to be true, and apparently it was.

Lycopene, found mainly in tomatoes and tomato products, had little impact on prostate cancer risk in a new study from the National Cancer Institute and Seattle's Fred Hutchinson Cancer Research Center.

Early research suggesting a protective role for lycopene spurred great commercial and public interest in the antioxidant in the late 1990s.

But subsequent studies have been either contradictory or inconclusive, Fred Hutchinson assistant professor and researcher Ulrike Peters, PhD, MPH, says.

The new research, led by Peters, is one of the largest and most rigorously designed trials ever to examine the issue. And the lycopene findings were unequivocal.

"It would be great if it were true. [Eating tomatoes and tomato products] would be a cheap and easy way to lower prostate cancer risk, and it would be a great public health message," Peters says. "Unfortunately, it's not that easy."

Colorful Nutrients
Just as the similar nutrient beta-carotene makes carrots orange, lycopene is responsible for the bright red color of tomatoes. The two compounds are among the pigments synthesized by plants and are known as carotenoids.

The latest study involved 28,000 men between the ages of 55 and 74 participating in a larger, nationwide cancer screening trial. Blood samples were taken from all study participants at enrollment, and blood levels of lycopene, beta-carotene, and other carotenoids were measured.
The men also completed questionnaires assessing their diet, lifestyle, and overall health.
During up to eight years of follow-up, 1,320 cases of prostate cancer were diagnosed among the men in the study.

There was no significant difference in blood lycopene levels among the men who developed prostate cancer during the follow-up and those who did not.

However, beta-carotene was associated with an increased risk of aggressive prostate cancer.
The researchers found that men with the highest blood beta-carotene levels had a much higher risk of developing aggressive prostate cancers.

Peters calls the finding surprising.
"We are not sure if this was a real effect, or one that was due to chance," she says. "We do know [from other studies] that very high doses of beta-carotene seem to increase lung cancer risk in smokers."

The results do not support the use of lycopene, beta-carotene, or other carotenoids in prostate cancer prevention, the researchers write.

Focus on Diet, Not Pills
So what can be said about the influence of diet and lifestyle on prostate cancer risk? Not much, says Peters.

There is growing evidence that obesity increases a man's risk for the disease and some suggestion that a healthy diet may be protective. But neither association has been proven.
American Cancer Society nutritional epidemiologist Marji McCullough, PhD, says it is increasingly clear that cancer prevention efforts should focus more on healthy diets and less on single nutrients like lycopene and beta-carotene.

"Single nutrients don't always give you the big picture," she says. "We saw that a few years ago in the beta-carotene studies."

Researchers thought taking beta-carotene would help prevent lung cancer in smokers, but they ended up finding more cancers in the smokers who took the antioxidant supplements.
McCullough says the message from those studies and this one is that until more is known, individual carotenoids should not be taken in high doses in supplement form.

"I would recommend that people try to get their carotenoids and other nutrients from the foods they eat," she says. "That ensures that they are getting the nutrient in its natural form along with the other nutrients in those foods."

May 15, 2007

A rather large knot in my stomach

As I go through the motions of my daily routine, I am struggling to focus, as I am quite distracted. We received word this morning that our secretary passed away this morning.

I wrote about her in here a few times. She was a lovely lady, kind, friendly, always willing to help out. She battled cancer at least twice over the years. Her husband continues his own battle and her mother recently passed away from breast cancer. How unfair is that? A triple dose.

Her cancer returned and she was gone so quickly. I talked to her about her condition ten days ago or so. She was going through another round of chemo and on medications to deal with back pain. Apparently, it quickly spread to her liver and possibly other organs. It took her quickly. I pray she experienced no pain.

A gloomy, rainy day in Kansas City just got a lot worse.

God, please take care of her and continue to watch over her husband.

Absolve, we beseech Thee,
O Lord,
the soul of Thy servant Theresa,
from every bond of sin,
that being raised in the glory of the resurrection,
he may be refreshed among the Saints and Elect.
Through Christ our Lord.

May 11, 2007

Mother's Day

On her I'm dependent,
she is my guide,
my editor in resident.
She is why,
I live and breath,
leaving her, is why I cry.
Best friend and confidant,
immortal companion,
in the best way, a co-dependant.
She deserves much more,
a week, month at least,
one day only, to hold up and adore?

May 07, 2007

28 Days at a time.....

Now that the the elation of my latest PSA has worn off I thought I'd share a little something.

The high from a good PSA score usually lasts over the first weekend after we get the news.
Then, things return to 'abnormal'. They return to thinking about, what is next?
- What if next month the number jumps?
- What can I eat that might help?
- What can I do to assist the current medications?
- How much more green tea, pomegranate juice, green veggies, fresh fruit can I eat?
- Was three glasses of wine too much the other night?
- I gained four pounds over the weekend. [Mary is happy]
- Should I work out more or less than I have been?
- Should I not ride the exercise bike the week leading up to the next test?
- Will there be any announcements about trials, drugs, breakthroughs in the coming month?

We have been wanting to return to Florida over the summer, when is too far out to plan? I have been meaning to take a training class for work in Atlanta, when should I schedule it? We should probably get to St. Louis over the summer, can we fit it in? Everything we plan to do is scheduled around the monthly doctor appointments, which vary by month and in some cases, based on the current test results.

These thoughts pretty much circulate through my head each month. My life has now become chunks or periods that last the 28 days between tests. Planning too far ahead is a task, and is risky.
From a distance, it appears our lives are quite 'normal', but in actuality, they're not. We like normal, and try hard to maintain as normal a lifestyle as possible, give our situation.
As in the past, this is not a complaint, just an observation I share with you.

May 03, 2007

No more waiting!

The moment you have all been waiting for has arrived. OK, the moment Mary and I, and some of you have been waiting for has arrived...the nurse just called!!!!

Did all the exclamation points give it away?
Yes, it is good news! Maybe I'll break down and have a pizza this weekend!
Probably not, but maybe.....

Anyway, Mary wins this month, she guessed 15 and the number was:


Here's an inventory of the historical numbers:
Date: PSA:
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)
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 1.45
1/27/06 0.44
12/28/05 1.85
[some day I'll go find the missing data]
Pre-treatment test: 2/?/05 219
Original test: 12/?/04 189

I don't know what to say? I know I keep saying this, but I really feel better than I have in months!
I continue to thank God for the strength he has granted to me to deal with this.

May 01, 2007

You Just Have to Love Tony Snow

I really miss him on the radio. He is such a wonderful person.
This is from his first day back on the job, a few highlights in bold!
Press Gaggle by Tony Snow White House Conference Center Briefing Room
10:26 A.M. EDT

PRESS CORPS: (Applause.)

Q Where ya been? (Laughter.)

MR. SNOW: Just hanging out. Thank you so much, it's great to be back.

Q We thought Rove double-deleted you. (Laughter.)

MR. SNOW: All right. Well, on that note, let me announce the President's schedule for today. .........

Let me also just -- some personal comments -- and I'll try not to get choked up, so I'll go slow. You never anticipate this stuff, it just happens. I want to thank everybody in this room. You guys -- (thumbs up.) (Applause.) I'm getting there.

Q We're glad you're here.

MR. SNOW: Thanks. And thanks for the basket. (Laughter.) I want to thank you all. It really meant the world to me. Anybody who does not believe that thoughts and prayers make a difference, they're just wrong.

Q Take your time.

MR. SNOW: I will, thanks -- especially you. Just a couple things about my situation. I'm not trying to feel sorry for myself, I'm just going to stop being choked up, because you guys have been so wonderful.

I'm a very lucky guy. As I told you before, we were, out of an aggressive sense of caution, going to do an exploratory surgery that did indicate that I still have cancer. Now, I know the first reaction of people when they hear the word "cancer" is uh-oh. But we live in kind of a different medical situation than we used to. And I have been blessed to be treated by, supported by some of the finest doctors in the world. What we are going to do -- we had surgery, where we did disclose -- and there are some cancers in the peritoneum and we are going to attack them using chemotherapy -- I'll start chemotherapy this Friday.

The design is to throw it into remission and transform it into a chronic disease. If cancer is merely a nuisance for a long period of time, that's fine with me. There are many people running around -- and I must tell you, I have received a lot of notes from folks who have had far worse cases than I have, who have survived many years with the kind of regimen that we're talking about, which is chemo up front, and then maintenance chemo to continue combating cancer tells.
I won't tell you how it's going to work out, because I don't know. But we obviously feel optimistic, and faith, hope and love (I hear you Tony, I hear you!!!!) are a big part of all of it.

The other thing is that I hope folks out there who may either have cancer or have loved ones with cancer need to know a couple of things. First, don't go it alone. The support I've received from you and from my colleagues at the White House and people around the country has been an enormous source of strength. You can't -- there's no way to quantify it, but you feel it. You feel it in your heart. And in many ways, that may be the most important organ for recovery, to have the kind of spirit and to realize that, in my case, I'm unbelievably lucky and unbelievably blessed -- and really happy to be back.

The other thing is -- so don't go it alone, and the other thing is be of courage. Realize that in an age like ours, things are happening very rapidly in the medical realm. I'm taking a cancer cocktail this time around, a chemo cocktail that's going to contain two agents that were not in broad use two years ago. Things are moving very rapidly, and there's always hope.

Not everybody will survive cancer, but on the other hand, you've got to realize you've got the gift of life, so make the most of it. And that is my view, and I'm going to make the most of my time with you. I'll take questions.