blog

Laugh, think, cry

While channel surfing last night I flipped over to ESPN (it’s what guys do, I’m sure it’s hereditary). During halftime of the game between Oklahoma State and Syracuse (The Jimmy V Classic) they played a speech he made at the 1993 ESPY awards. I remember seeing it in the past, not sure when but based on how it mesmerized me, it had to be before I was diagnosed. In the speech he talked about his philosophy of life while he was fighting cancer. It basically came down to three things that we must do everyday: we must 1) laugh 2) think deeply about something and 3) get emotional about something.

As you can imagine, his second and third are easy for me, finding something to laugh about can be a struggle! I try. I’m not a real uptight person anyway but finding something to laugh about can be hard at times. As I’ve repeated many, many times here I don’t get too high from the highs or too low from the lows.

Brad and I have been laughing a lot together lately. We watch a lot of HGTV at night, there’s just no good family shows on TV, a bunch of filth, but I digress. He and I like to make fun of some of the shows, the ones where they take what amounts to junk and “spruce it up and give it some pop”! The discussion usually involves me, in my best British accent: “We’ll I found this tree branch down at the curb, I glued some lovely artificial leaves to it to hide the wire. Then I painted it black and I found this lovely lamp shade up in the attic, and now we have a beautiful lamp for above the fireplace”! Do they ever think the lamp shade is in the attic for a reason and the junk is by the curb becasue it’s garbage?
-You probably have to be there, it’s not that funny but to see him laugh, one of those gut-busting-trying to catch his breath laughs, well it is just priceless. That is what life is all about; to see your child laugh and laugh so hard it almost makes him cry…..it brings a tear to my eye.

Just by writing this I have completed Jimmy V’s three tasks!

Here is more information on the foundation: http://jimmyv.org/
One of the most incredible things about this group is this:

The V Foundation for Cancer Research officially announced that effective with its new fiscal year October 1, 2006, 100 percent of all new direct cash donations and net proceeds of events contributed to The V Foundation will be used to fund cancer research and related programs.

What this means is in just 13 years the endowment of the foundation is now covering 100% of the overhead and administrative costs of the foundation. Very impressive!

Thanks for the prompt John, I was struggling to find a topic, this was perfect.
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All is well with me. My monthly doctor appointment, blood test and Zometa treatment are Monday the 11th.

Ring go the bells, so many bells…

I love it! It’s Christmas time. With Thanksgiving falling so early, I find this somewhat strange because it’s not even December yet?

I spent the weekend with a paint brush and roller in hand. Our basement really needed a new coat of paint and so after 3 days, 17 hours, 5 college football games, two NFL games I’m done! None of our Christmas decorations are up but wow does our basement look good!

No updates of the health front, even after all the standing, bending over etc. my back and legs feel great. I even managed to sneak in three rounds of disc golf between last Wednesday and Saturday. The weather here was great, no coats required, just jeans and long sleeve t-shirts.

I’ve added a new link to the right. It takes you to “Objective: a Healthy Eric”. He’s a friend of a friend. He’s dealing with a different cancer, in a different way….his posts are very emotionally honest to say the least. Check it out when you have a chance…

Gone but never forgotten

A very dear friend of our family passed away today. She had battled cancer for over thirteen years. She and her husband have been friends with my parents for at least thirty years.

Over the past month I thought about her at least three or four times. Each time I was driving to/from work and thought I need to call her. I had heard she had been going through a rough patch and things werent looking real promising. Due to distractions at work, or when I arrived home, I never made the time to place the phone call. I really wish I could have said goodbye. She was a sweetheart.

In the latter years of my Moms life, she always helped out at dinner parties, etc. that Mom and Dad would have for work.

Or when they traveled together to conventions, she always made sure Mom was included, even though her mobility was limited. She had reached out to me when I was first diagnosed. Its been almost two years since she called, I can still hear her telling me, Ive been fighting cancer for eleven years now, you need to be strong, be positive and don’t ever give up.

To her husband I can only say, “Roger, know this, she may be gone but shell never be forgotten. She touched a lot of people, in a positive way. She was a beautiful, kind person and Mary and I feel incredibly blessed to have known her.”

Cuarenta tres sesenta uno!

Spanish never sounded so good!!

43.61 – that was the result of my PSA test on Monday. Down another twenty percent in three weeks time!!

Additionally, the blood tests that were done to make sure my new meds are not negatively impacting my kidneys and liver all came back normal, which was great news as well. We will continue to monitor this closely, along with the PSA #. I had my third Zometa infusion and this time I experienced no bone pain afterwards. I am hopeful that this will continue to be the case going forward.

As the Oncologist said Monday…“Full Steam Ahead”!

Looks like we’re going to slide through the holidays without having to even think about chemo!!
I’m hoping we glide right though Spring, through 2007 and beyond.

Since I like to tie music into my posts, here’s a little Janes Brown….everybody with me now: “I feel good, na-na-na-na-na, I feel nice, like sugar and spice….”

I’ve mentioned the stress of work here a number of times lately. IT has provided me with a good distraction while awaiting test results. We launched the product on Monday. It has been an awesome experience. I am privileged to work with some really great people! This morning I had the opportunity to do a demo for our CEO and his lead team. The demo went without a hitch and was well received.

I have always been a very even tempered person. Emotionally I don’t fluctuate a lot day to day, week to week. The same holds true when dealing with stress. At times I get the impression this kind of freaks my boss out a little bit. Last week, as we were preparing for Launch Monday, we ran into several critical issues. My demeanor didn’t change a bit. Inside I was a going nuts, Friday afternoon was perhaps the most stressful work related situation I have experienced in many years. Perhaps it’s the cancer? You see, at the end of the day, how I perform and how that impacts my career just aren’t that important to me. Don’t get me wrong, I busted my butt on this project, giving 110% at all times, but what I think I have discovered is, I don’t get stressed out because at the end of the day, in my life, there is something just a little more important. I’m not sure if this all makes sense, but that’s my story, I’m sticking to it.

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I was reviewing the posts of the last week and as I reread my post of 11-12, I was concerned that the message might be interpreted incorrectly. It was a risk at the time to post those thoughts. I feel that I should follow up with this; I was not at all being judgmental. My point, and the only point I intended to make was that my hope for those close to me, as well as everyone reading this; DON’T WAIT UNTIL IT’S TOO LATE. TAKE CARE OF YOURSELF, YOU ONLY GET ONE CHANCE. Again, change is difficult, I know that and have lived it. My only point is you can be forced to change or you can choose to change!! I wish I would have made a change on my own terms, regarding leading a healthier lifestyle.

Hold it right there…..

Whether it is at our recent golf tournament or at last night’s poker event, I continue to be overwhelmed by the kindness and generosity of friends and strangers.

Thirty two players attended our first ‘Texas Hold ’em’ event last night at Johnny’s Tavern here in Overland Park. I was a little concerned leading up to the start of the event. We didn’t request an RSVP. In fact, by yesterday afternoon, I was stressing a bit…picturing myself sitting at a table with the other members of the FLHW Board playing poker. Don’t get me wrong, the Board is an exceptional group of people, I was just hoping we would have a great turnout for the event!

Never, ever doubt the willingness and desire of others to help out. Due to last night’s event, we will be increasing our donation to the Prostate Cancer foundation by an additional $1,500! This amount will also be matched, dollar for dollar. This brings the total donation, with matched funds to $3,000 for poker, $40,000 for golf and a grand total of $43,000!

In the last week there have been a number of stories in the news regarding innovative treatments being tested with success as well as existing clinical trials that continue to show great promise. Being able to support the Prostate Cancer Foundation and knowing these funds are supporting these very trials encourages us to be strong and have hope that better options are in our future.

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One thing I don’t talk about too often is that the treatment choices regarding PC are not really concrete. In my case, it’s pretty straight forward, as there are limited options at this time, but in other cases, particularly those that are caught early, one could go see ten doctors, five would recommend surgery, five radiation. There are just no absolutes. Every case is different. I offer words of advise to those newly diagnosed, regardless of the stage…do your research and get as many opinions as you need to before you are comfortable with your treatment protocal. Because there are not absolutes in PC treatment, follow your intuition. It has not failed us yet!

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Please add RT to your prayer list. He’s a friend/co-worker that was recently diagnosed with PC. It was caught early but, but there are still decisions to be made. He is currently contemplating surgery or radiation treatments as mentioned above. Once again, please add him to your prayer list. I’ve added him to mine!

Reflections of, the way life used to be….

It’s Saturday, November 11th. I write this from my brother Doug’s hunting cabin in Macon, MO.

The six other guys I’m up here with have been out hunting since about five o’clock this morning. We actually saw snow flakes last night. Winter harkens at the door.

A brisk, autumnal day opens with a clear cloudless sky. It’s a beautiful morning. The temperature dropped to about twenty-seven over night. It is supposed to climb to forty-five by this afternoon.

I would call this place a ‘hunting lodge’ but once you see it you realize it’s really just a house, that happens to be inside of a barn. In the twelve months since these guys bought the place they have conducted an unbelievable transformation. What was once a metal barn for farm equipment has become a four bedroom, two bath home. I’ll try to include a few photos.

While the others are out hunting, I am provided with a little alone time. I’m not sure when the last time I was away from home and Mary and Brad and alone for a few minutes? Perhaps Sweden? Of course my mind immediately begins to think about PC. Being out here so close to nature, so close to God, I can’t help but thinking, “I don’t want to die”. (Sorry Mary, I’m not any more or less concerned than I have been for the past twenty-one months, I’m just capturing my thoughts as I let the beauty of the world engulf me). I have to beat this, there is no option. Wishful thinking? Perhaps, but as I have said here many times before, I’m not giving in, I will always continue this battle. Knock me down, I’ll get back up. Kick me while I’m down, I’m coming back. And so the battle continues.

At the same time I’m somewhat befuddled? I look at some of the people closest to me and I ask myself why they haven’t changed? I would never say anything to them directly, but I guess I am doing so by writing this blog? I want them to wake up and start taking care of themselves. I don’t want them to wait until something like cancer ‘happens’ to them before they change. I wish they would eat better, do a little exercise, maybe have a few less drinks now and then. Listen, I fully realize without PC I’d be right there with them; eating poorly, doing no exercise, drinking too much. The reality is I do have PC, I have changed, I pray that they make some change, even a little one. In the end we’re all human, change is hard, I love them no less.

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Today would have been Grandma’s one hundred and first birthday. I miss her, I miss her blue eyes. I will forever thank her for mine.

Today is also Veterans Day. With great reverence I pay my respects to Pop’s, Rich, Scott J. and all veterans in our country.

Feeling Kooky and a Provenge update

I just realized it’s been a week or so since I posted.

That’s good news because there are no updates! I’m feeling great, no aches, pains etc.

My next appointment is Monday; blood test, Zometa treatment, discussion with Dr. H. etc.

Work is crazy! We are launching a new product on Monday. I have spent the last 12 months or so working on this service and there are a million little things to wrap up! I thrive in this environment, it’s stressful but very exciting!

Here’s a new band you should check out: The Kooks
They are UK based, good stuff!!!
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Dendreon lauds new tests of prostate-cancer drug
By Luke TimmermanSeattle Times business reporter
Dendreon said Wednesday that its prostate-cancer drug performed significantly better than a placebo, based on preliminary results from a clinical trial of men with early stage disease.

The study examined whether Dendreon’s Provenge could extend the time it takes for PSA scores to double in 176 men. For doctors, the PSA (prostate-specific antigen) is a key measurement of disease activity. Some studies have suggested that if patients have a slower PSA doubling time, they are likely to live longer.

The Seattle biotech company has not presented detailed results at a medical meeting but plans to do so. On a conference call with analysts after its earnings announcement, Dendreon said patients on Provenge had a 35 percent increase in PSA doubling time, compared with patients on placebo.

Side effects of Provenge included fever, chills and headache that lasted one to two days, similar to results from earlier studies.

Dendreon said it will follow the patients for years, to see if Provenge can provide a survival edge, as it did in a study of patients with late-stage disease.

“We are extremely pleased with the outcome,” Dendreon Chief Executive Mitchell Gold said.
Dendreon stock rose 5 percent after the news, to close at $5.47 a share.

Charles Duncan, an analyst with JMP Securities, called the results “medically interesting.” He said it will strengthen the company’s case that Provenge is safe, stimulating the immune system as intended and slowing the disease.

Duncan, whose firm has done investment banking for Dendreon, said the results could help Provenge reach a larger group of patients, with early and late-stage forms of the disease.

“It’s good data,” Duncan said. “If they hadn’t gotten this, the FDA [Food and Drug
Administration] would have been scratching its head about what’s going on with this drug.”
Gold said the company remains on track to submit its complete Provenge application to the FDA by year-end.

The FDA has considered, but not allowed, companies to make marketing claims about a prostate-cancer drug’s efficacy based on PSA doubling time. It prefers the gold-standard measurement of patient survival.

The monkey takes a break…..

For the past few days things have been a wee bit anxious. I had blood drawn on Wednesday and we have been waiting on pins and needles since.

Mary and I are apparently becoming old pro’s at this, we talked about it briefly at lunch the other day, but we know where we are on the roller coaster, why go over it again and again. Maybe we should talk about it more, however after all these years of marriage, like most couples, there is a lot of non-verbal communication.

Have I strung you along long enough? Here is the news; my latest PSA is 51.48. Four weeks ago it was 83.97. While 51.48 is not very good in the grand scheme of things, it does represent a decrease of almost 40%!!! In addition, all my other blood, liver measurements are normal!

Next step, keep taking the combination of Ketoconazole and Hydrocortisone. Then I’ll have a new blood test and Zometa treatment #3 on November 13th. If the numbers down, we keep on keeping on. If they go up, then we discuss with the doctor’s if we give it another month or jump right into chemo. I was left with the impression after our last meeting that either way we’re off the hook until December.

So goodbye little monkey, get off my back and go stand in the corner for awhile. As a matter of fact, why don’t you just let yourself out and don’t come back!
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Today’s musical interlude comes from Big Head Todd and the Monsters and their 1993 album “Sister Sweetly“. The song is “Circle” and it goes something like this:
As I pick you up,
You drag me down,
As I come to you,
You turn around,
Rise and fall,
Turn the wheels,
’cause all life is a really just a circle…..

Looking ahead….

A bad sports analogy but appropriate for these two stories. One is specific to PC and is likely to gain FDA approval and reach the market in the next 12-18 months. The second is longer term in nature and currently being tested only on laboratory mice.
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Dendreon Announces New Data Analyses Presented at Prostate Cancer Foundation Scientific Retreat
PROVENGE Significantly Extends Prostate Cancer Specific Survival in Advanced Prostate Cancer
SEATTLE, WA, October 20, 2006 – Dendreon Corporation (Nasdaq: DNDN) today announced that Eric J. Small, M.D., professor of medicine and urology at the University of California, San Francisco presented new exploratory analyses of the Phase 3 Study (D9901) that further support the results observed with the Company’s investigational active cellular immunotherapy PROVENGE® (sipuleucel-T) in men with advanced androgen-independent (hormone refractory) prostate cancer.

These data were presented at the Prostate Cancer Foundation’s 13th Annual Scientific Retreat held Oct. 19-21, 2006 in Scottsdale, Arizona. The Company plans to complete the submission of a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) prior to the end of this year to seek approval to market PROVENGE.

The analyses presented by Dr. Small showed:
The overall survival benefit does not appear to be due to any imbalances in the treatment arms or the subsequent use and timing of chemotherapy. As published in the July issue of the Journal of Clinical Oncology, the Phase 3 Study (D9901) demonstrated a median overall survival of 25.9 months in the PROVENGE arm compared with 21.4 months in the placebo arm, or a 4.5 month survival difference. For these men, there was a 41 percent overall reduction in the risk of death (p-value = 0.010; HR = 1.71); and

An analysis of prostate-cancer-specific survival showed a median survival of 35.2 months for patients randomized to PROVENGE compared to 23.5 months for patients randomized to placebo, a difference of 11.7 months and a 50 percent reduction in prostate cancer-specific mortality (p-value = 0.002; HR = 2.04).
A link to Dr. Small’s slide show presentation is available via Dendreon’s web site at http://investor.dendreon.com/medialist.cfm

“These and other analyses we have performed further support our BLA filing, which we intend to complete this year,” said Mark Frohlich, M.D., vice president of clinical affairs at Dendreon. “We remain focused on the goal of making this active cellular immunotherapy available for the treatment of the many men with advanced prostate cancer who currently have few appealing treatment options available to them.”

About PROVENGE (sipuleucel-T)
PROVENGE (sipuleucel-T) is an investigational product that may represent the first in a new class of active cellular immunotherapies (ACIs) that are uniquely designed to stimulate a patient’s own immune system. ACIs hold promise because they may provide patients with a meaningful survival benefit with low toxicities. PROVENGE targets the prostate cancer antigen, prostatic acid phosphatase (PAP), which is found in approximately 95 percent of prostate cancers. PROVENGE is in late-stage development for the treatment of patients with advanced prostate cancer. In clinical studies, patients typically received three infusions over a one-month period as a complete course of therapy.

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Scientists Say Cancer-Killing Virus Developed
Agence France-Presse | 10.19.2006

SEOUL —South Korean scientists have said they have developed a new genetically altered strain of virus which is highly efficient in targeting and killing cancer cells.

The new therapy developed by the team from Yonsei University uses a genetically-engineered form of the adenovirus, which normally causes colds.

The adenovirus was implanted with a human gene that is related to the production of relaxin, a hormone associated with pregnancy.

When injected into cancerous tumors, the virus quickly multiplies in the cancer cells and kills them, the team said.

The new adenovirus can target only cancer cells and does not harm normal cells, the team said.

Existing viral treatments fail to kill off all the cancerous cells.

“I believe we have found a way to overcome one of the great obstacles to finding a genetically altered viral cure for cancer,” Yun Chae-Ok, one of the researchers, told AFP on Thursday.

Following three rounds of injections, more than 90 percent of cancer cells in the brains, liver, lungs and womb of mice disappeared within 60 days, the team said.

Clinical tests will be carried out early next year and last 18 months, Yun said.

The research results were published in the October 18 edition of the prestigious bimonthly Journal of the National Cancer Institute in the United States.
Copyright 2006 Agence France-Presse

20 Months and counting

For those of you in KC, have you been outside today? I should be on the course (ball or disc!!) We have a good chance of rain tomorrow so it may be two weeks in a row without playing.
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Any Cardinal fans out there? How ’bout them Birds!! I was jumping around our bedroom like a fool last night!! Mary and Brad thought I was nuts! I don’t know what was more exciting, Molina’s homer in the ninth or watching as the $14 Million dollar ‘Cardinal Killer’ Carlos Beltran’s knees buckle on a called strike three!!! Nothing like a guy making one fortieth of your salary striking you out looking in the bottom of the ninth, with the bases loaded! It was classic!!! Now we face the Tigers, I’m not sure we have the pitching to hang with these guys, but then again, I wasn’t confident that we could beat the Padre’s or the Mets. That’s why they play the game.
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Day 4 post Zometa treatment #2, nothing to report. Lower back pain, gone. No Advil since Tuesday.
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Golf Tournament Update:
Many people have been asking, I was hoping to get all our checks and bills in first to make it 100% official, but what the heck, the cat’s out of the bag: WE DID IT!!! We reached our goal of raising $20,000!!! The next step is for the board to meet next week and approve the financials. Even better news is we still have a chance to double the donation. A generous donor to the Prostate Cancer Foundation is matching all donations, dollar for dollar!
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Do you like Texas Hold ’em?
Then join us on Monday November 13th at Johnny’s Tavern on 135th Street! Click here for all the details.