Focus Pocus

With the new year will come a new dedication to exercise. I have been slacking off for the better part of a month. Though I have a reason, it's not a very good one. I do experience the occasional aches and pains. Nothing serious, it is just providing an excuse to sleep a few more minutes. I plan to start the new year with a renewed vigor.

I am two weeks into the new medication (high dose Casodex) and though I won't know if it's working for two more weeks, I believe my body is saying it is working. Time will tell.

2011 will be here in a few days. There is a lot to look forward to this year. I'll celebrate my sixth year of being a Prostate Cancer survivor. Where did the time go?  Brad will graduate from 8th grade and subsequently start high school. Mary and I will celebrate our 20th wedding anniversary and my dad will turn 80. I'm sure there are more, but for now, these are the milestones that lie ahead.

Happy New Year to all of you! May it be filled with wonderful times and glorious memories!

FLHW 2010 - a year in review

A few weeks ago we made our annual donation to the Prostate Cancer Foundation (www.pcf.org). After setting what was certainly an aggressive goal of a $40,000. donation this year, a 25% increase from 2009, I am proud to say that we made it! With this donation our cumulative donation to PCF is now $175,000. In addition, each year we take advantage of a matching program which makes the overall donation $350,000.

I picked this up from the PCF website. From a personal view, the future looks very encouraging!
2010 has been a great year for advances in prostate cancer.

• Two new drugs - Provenge and Cabazitaxel - were approved
• Two more drugs - Denosumab and Abiraterone - are pending approval
• A fifth drug, Ipilimumab, is in Phase III clinical trials
• Researchers at the University of Michigan discovered the 24 types of prostate cancer
• The cell of origin for prostate cancer was also discovered

To the FLHW Board, family, friends, donors, participants and sponsors for each of our events, I express my heart felt thanks. In the midst of the storm that is my battle with this disease, you all provide hope for me and hope for the men that will follow.

I found this story and it reinforces perhaps one of the ways we were able to accomplish this goal. You have to remember before reading this that overall charitable giving in 2009 was down again.

 

Kansas City Business Journal

Date: Friday, December 10, 2010, 2:49pm CST

Kansas City ranks No. 3 on a list of the nation’s most charitable cities, according to The Daily Beast.

About 3.5 percent of earnings in the city are donated.  Kansas City’s average household income is $84,923; giving per foundation amounts to $863,859; and there are 470,800 volunteers during the year — nearly 23 percent of the population.

FLHW 2010 – A year in review
(Dollar amounts below are approximate)

Poker for Prostates: February 16^th 
44 Attendees
$1,500

2^nd Annual Friday Night in the Greenhouse: May 7th
$1,400

3^rd Annual FLHW Disc Golf Tournament: May 8th
43 Teams (the most ever!)
$3,000

1^st Annual Warrior Combines: July 24th 
20 Participants
$1,000
Extensive coverage on Fox4 KC

Participated in 'The Summit to End Prostate Cancer' in Washington, DC: September 12th

Morse, Solomon & Ward/Ameriprise Customer Golf Event: September 17^th
48 Players
$4,000

6^th Annual FLHW Golf Tournament: September 24^th 
132 Players
$27,000

Poker for Prostates: December 6^th
33 Players
$2,000
Interview on sportsradiokc.com

A book and it's cover

I attended a holiday get together the other night. Like most of these type of events, it was a good mix of people I see often, and those that I haven't seen in a while. 

At one point I was talking to a person that I see several times a year and whom I thought was up to date on my situation. My mistaken assumption. After a little small talk she asked how things were going with my health and made the offhand comment, ‘you’re in remission now, aren’t you?’. I gave her the update, and probably more since that is a habit of mine, but the conversation stuck with me. 

Now, a few days later and I began to ponder this;  I imagine for a lot of people at our church, school and neighborhood, who really don’t know me that well and aren’t probably readers of this blog, they see me and think ‘well he looks great, he must have gotten over it’. [note, when I said ‘looks great’, I mean healthy]. Frankly, I do look healthy and happy so how would anyone know. The same may be said about them and my view and assumption, I see them and they ‘look’ alright, but in reality I have absolutely no idea what’s going on in their life beyond the small talk we exchange at a holiday party.

There is nothing more, nothing deeper, just an observation on my part.

On to my treatment decision. It looks like after all we may be headed east, versus west. Nothing is concrete, but through some initial discussions with the clinical nurse it appears the opportunity in Los Angeles would  require nine round trips in the first three months. I’ll provide more updates as we get then but for now it looks like we might be headed to New Jersey three times in a month, but then we’d be done with that treatment.

Interview on sportsradiokc.com from 12-3-10

I finally received a copy of the radio interview from December 3rd.
It's approximately 13 minutes long. I posted it at flhw.org

http://www.flhw.org/in-the-press

I really appreciate the opportunity to share my story. Thanks to Matt and the guys at sportsradiokc.com

Go west, young man

Dr V called Friday night with the results of my CT scan. That's right, my doctor calls patients at home on a Friday night! His news was for the most part good.
1) No, the cancer has not spread to any organs.
2) The radiologist noted a new tumor in the T5/6 vertebrae. This was new compared to the CT scan from 12 months ago, but we were made aware of this new tumor when he communicated to me the results of my last bone scan, which was last month.
3) There are three areas with enlarged lymph nodes, two nodes above my prostate, two below and two in my neck. The largest being approximately 3cm or a little more than an inch, this was near my prostate. The other areas were smaller.  He recommended for now we keep an eye on these and they should go down as we treat the disease in total. In other words, get my PSA down and these could go away as well.

This news is good in the sense it just eliminated one option and made my next treatment decision a choice of two Provenge (immunotherapy - vaccine) or Abiraterone (oral - pill). Both are going to require travel, the former to the east coast, the other to the west. I'll wait and see how things evolve but there's a little voice saying, 'Go west, young man'.

Which road to take

As I ponder what’s next and what lies ahead medically, I can’t but help think of the opening to the Robert Frost poem ‘The Road not Taken’

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

A slight difference is my road ahead not only diverges but divides thrice. If all three treatments become viable options, which one do we chose? There are puts and takes to each, both known and unknown impacts involving side effects and long term sustainability, but that still leaves us, as Frost implied, standing here, contemplating the choice, the future.

Perhaps, like the poem, we’ll look back on this decision like this;

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

Poker for Prostates

On Monday night we held our 9th Poker for Prostates event!
It never fails, at every event there is someone that I am blessed to know, who steps forward and amazes me with their generosity! Thanks to him, I am forever grateful!  Once again, I am humbled by the support of all the participants and volunteers who made the evening a success.

The event resulted in 33 players who helped us to raise nearly $2,000!!

This moves us closer to our 2010 goal of donating $40k to PCF, which repesents an increase of 25% from 2009!!

 The action begins!                                  The final table!

 Steve, Mark and David                         Bruce 2nd Place, Brad 1st, Rob 3rd

An alteration, a variation or perhaps I just go with 'an adjustment'?

I had my monthly appointment with my oncologist, Lupron shot and Zometa infusion yesterday. The latter two items went off without a hitch, as usual.

My PSA however was up again and now at 81.2

I was not at all surprised with this increase based on the previous two PSA readings and how I feel.  Let me clarify how I feel, overall I feel great. However, because I have a very high tolerance for pain and the fact that after six years of this I am very in tune with every ache and pain in my body, I knew the PSA was up. Nothing severe, just an occasional twinge in my hip or leg(s) etc., no Advil needed it comes and goes.

So it seems that the DES (estrogen) has run its course and so it’s time for a change. We have discussed a number of possible treatments with Dr. V however, two are not yet available and the doctor's team is still trying to coordinate the third. Given this and the need for a change we decided that as a short term stop-gap I would replace the DES with high-dose Casodex. Casodex is an anti-androgen that is combined with Lupron as the ‘standard’ treatment when men are initially diagnosed with advanced PCa. I was initially on Casodex for the first year after diagnosis. In a high-dose dosage there were a few small studies ten years ago that showed some limited benefit. If my results are nothing more than the stabilization of my PSA while we line up the next treatment, I’ll take it.

On another note, the doctor did feel a slightly enlarged lymph node in my neck. He didn’t seem too worried but I am having an abdominal CT scan on Thursday just to be safe.  There are times I think my laissez-faire attitude or sarcasm leaves Dr. V dumbfounded. For example, after telling me about the lymph node and the order for a CT scan, I responded with the following; ‘Well I guess the CT could result in a bad news, good news situation. The bad news is we found something, the good news is you now qualify for the XL 184 trial!’  He had no idea how to respond.

Just so you the reader understands, I honestly believe that because life itself is far too serious, you have to see the irony in things, and retain a little bit of sarcasm in your everyday life. Mary and I laugh a lot at this whole situation. When we left the doctor she said (thick with sarcasm)  “Oh well, just another appointment, your numbers are up, you have a swollen lymph node in your neck, you  have to have a CT scan, your iron level is down and I have three new prescriptions to get filled!” We then went on to ponder whether or not there was something wrong with us because of the way we react to news like the news we just received?  Shouldn’t we be upset, emotional, pissed-off, something? We are not naïve nor are we emotionless, it’s just after this much time we don’t fly off the handle or get too worried. It is what it is and we have to let it all play out before our eyes.

Just another day....

My day started with an email from a wonderful friend. With his permission I share it here: 

Bela read the FLHW card you sent.  Afterward we talked a little about FLHW.  She asked, "Papi, you remember when you came back from playing golf in Kansas and ask me to really pray for David"?  "Yes," I told her and I explained how the cancer appeared on your leg bone, how they radiated it making it go away, but how it would probably come back.  She said, "Daddy, I never stopped praying for him."

She got a long hug for that!

I'm not sure about you, but my eyes are welling up and this is the third or forth time I have read it. You wonder what gives me strength and provides me hope? I'm not sure there is anyway to make it clearer!

~~~~~~~~~~~~~~~~~~~~~~~~~~~

I had a last minute request to appear on an internet based sports talk station this morning at 11:30am. The station can be found at: www.sportsradiokc.com

They promised to provide a recording which I will post later.   

Oh, what a lucky man he was (is)

Six years ago this month my new life began. I really had no problem with my old life. I had a good job, beautiful, loving wife, awesome son, appeared to be relatively healthy and things seemed to be going quite well.

What started as a rather minor pain in my right hip, six weeks later, I was diagnosed as having ‘advanced, metastatic prostate cancer’. This all took place around the same time I turned forty-two years old. As a relatively young man, you can imagine the shock and disbelief.

Though Prostate Cancer is very treatable and curable when caught early, in my case, things were not to be. The cancer had already left the prostate gland and was present in my lymph nodes and in numerous places in my skeletal structure. As the x-rays revealed there were lesions present up and down my spine, in my ribs and extensively throughout my pelvis.

This may be misquoting, but the saying goes something like this, “There are lies, damn lies and statistics”. The odds for me were not good from the outset. Chance of cure or remission, none. Expected or typical survival time, 36 months.

Well here I am nearly six years later. I have been through a plethora of treatments. Some of these have worked wonders, though temporarily. My lymph nodes have been clear since six months after I began being treated but the bone lesions remain today.

From the outset I have been on androgen deprivation. This is a wonderful treatment that suppresses my testosterone to the point that I am basically a forty-seven year old man with the hormones of a pre-pubescent boy. In addition I have side effects similar to a menopausal woman. Yes, it is quite the combination! In addition to the constant hormonal treatments, I have been through chemotherapy, radiation, women’s estrogen, a clinical trial and a few other treatments. Each had its puts and takes, its good and bad but again none provided long term benefit, nor as I previously mentioned, a cure.

At this point most of you are probably wondering ‘how can this man think he is lucky’? It probably sounds like I am anything but lucky.

First off, I’m still here. There are a number of men, many close to my age, that lasted but a fraction of the time I have. For that I am truly blessed. There is also the hope of the future. When I was diagnosed in early 2005 a man at my stage, at this point in his post diagnosis treatment regime, would for the most part only have the option of chemotherapy left ahead of him.  The standard chemotherapy treatment for prostate cancer at the time, Taxotere, is usually tolerated better than chemotherapy given for other cancers. This is not to minimize the side effects of Taxotere, I am simply comparing the once every three week treatments to those of other cancers where the patient is subject to daily or multiple weekly infusions. The bad news however is there are very limited long term benefits from Taxotere. In 2005, after completing Taxotere treatments, a man would begin a slow and usually very painful process of dying. It’s not pretty and for someone who one day faces that future, the thought of this is also very hard to write.

This brings us to December of 2010. The future looks bright for those of us with advanced/Stage IV Prostate cancer. Well ‘bright’ might be too Pollyanna, but I challenge one to argue it is not encouraging.  Earlier this year a new drug, in an emerging class of treatments was approved by the FDA. The drug, Provenge is in a class of drugs referred to as ‘immunotherapy’. In laymen’s terms a patient’s white blood cells are extracted, sent to a processing center and three days later re-infused into their blood stream. During this three day period the chemical compound or the Provenge is fused with the patients white blood cells. The treatment process is repeated two additional times every two weeks.  There is some controversy with the price and long term benefit of Provenge,  those objections can be discussed by others in other forms.  My purpose for discussing Provenge here is that six years ago, it wasn’t an option at all. On a personal level, in all likelihood, this is my next step, but not my last.

After Provenge there are several other drugs that are either in late stage or Phase III clinical trials that appear to be an option in 2011. A trial in Phase III is a drug Abiraterone and XL184 is being monitored in a Phase II trial. Both are showing remarkable results. Additionally, there are others; MDV 3100, TAK-700, Cabazitaxel, Alpharadin and others. I’m not going to list them all.  My point is that there is a future, and once again a future offering much more promise than just a few short years ago.

Finally, I can’t help but think of the old adage and offer this, anytime you want to walk a mile in my size ten and a half’s, I’ll likely have to think twice about it, because even in the midst of what appears to be a hellish life, things are looking up. Furthermore, I am confident that I have a few more miles to travel in said shoes than you probably could have convinced me of back in 2005.

and in my human frailty....

Thanks to a friend Jeff for this video.
Stick with it, I liked the closing lyrics best.

Happy Thanksgiving to all.....

An all around bad news day

First off, no news about me, we are still waiting for the doctor to call with updates on potential treatments. I'll be calling tomorrow if we don't hear from him.

A good friend and fellow PCa survivor just received some real lousy news. Although his PSA has been low for the past few years, it started to increase slightly. He had new scans and unfortunately he has a few new tumors and must pursue a new treatment. He also looked into XL 184 but the current trial would require too many trips to the doctor. He's young and would like to continue to maintain a full time job, much like myself, so the logistics of the clinical trial pose another challenge to the 'next treatment' decision. I have corresponded with him over the last five years and hope to meet him in person some day.  My prayers go out to him and his family.

On the other coast there is a young couple who are struggling with their current treatment. He is my age and is in the midst of a clinical trial that is proving to be rather tough on him.  The side effects are becoming rather severe.  His wife posted earlier that they had spent most of the day in tears, so once again, my thoughts and prayers are with them as well.

In the spirit of Thanksgiving,  I ask that you join me in sending  your prayers their way. If you're not a praying person, at least send positive thoughts their way.My heart goes out to both families during this difficult time.

The first question and nearly every question that follows...

When first diagnosed with cancer we try to come to grips with 'Now what'? "Now what" with my life, my treatments, my family, my career and so on. The trepidation of now what does not end with the initial diagnosis, it goes on and on. With every up and down, every good test result and every bad, your mind immediately returns to the constant questioning. Now what?

I know some of you may be saying that this is no different than life in general, it's just human nature to question the future, to wonder what lies ahead. While I have no argument to counter, I do believe that it is much different for those of us with cancer.

My journey, though a tad short of six years, is a constant journey of questioning. Every four weeks I visit my doctor to be retested. The results of these tests never lead to peace in my mind or in my heart. If the numbers are good, I question 'For how long?'. When the numbers are bad, like they were last Monday, I wonder 'Now what?'. The very limited number of options I have continues to be a challenge and weighs heavy on my mind. There are three or four things I can do next, but none of them really provide substantial relief for my heart or mind.

I am not writing this from a place of depression, I'm actually in a great place mentally. I'm just trying to make a point so that when you see me, or talk to me and I say 'Oh I'm doing fine', it's a little more complicated than that...actually it's much more complicated. I try my best to remain hopeful. I just wish for a little while that I could get a reprieve from the 'Now what"!

I got the music in me

Ain't got no trouble in my life
No foolish dream to make me cry
I'm never frightened or worried
You know I always get by.
I heat up
I cool down
Something gets in my way I go around it
Don't let life get me down
Gonna take it the way that I found it
~~~~~~~~~~~~~~~~~~~~~~
Through all the ups and downs of this battle, the one thing, aside from the support of Mary, family and friends, that is a constant and that is music.

For you regulars you know my taste is all over the place. When I wrote this on Wednesday I had already listened to a variety consisting on amongst others; Peter Frampton,  Frank Zappa,  Jason Aldean, Kenny Chesney, Dave Brubeck and Keb Mo.

It's the escape, the flood of memories, the highs, the lows, the smiles, the tears. I never learned to play an instrument, I wish I had. No regrets becasue not being able to play has not tempered my love for music.

Help me help the PCa community!

As I mentioned yesterday, one of the options that might be available to me is a new drug called Provenge. Though this treatment was approved by the FDA back in April, Medicare is still dragging their feet.  I do not have Medicare, but this decision has an indirect impact on my insurance coverage because most private insurers follow the lead or negotiate the amount they pay the pharmaceutical companies, based on the decision of Medicare.

The Medicare Evidence Development & Coverage Advisory Committee (MEDCAC) of the Centers for Medicare & Medicaid Services (CMS) meeting is Wednesday, Nov 17th. Discussion will focus on the currently available evidence regarding the clinical benefits and harms of on-label and off-label use of Autologous Cellular Immunotherapy Treatment of Metastatic Prostate Cancer (aka Provenge), and if it is adequate for the Committee to advise that the treatment costs be covered by Medicare.

THIS should be very important to all of you, regardless if you or a loved one has Prostate Cancer. Why? This is a landmark and historic decision by MEDCAC as they are evaluating for the first time 'how much is too much'? Depending on their decision, it could have historic impacts on other cancer treatments, as well as other medical treatments in general.

We still need your help...

For those of you who have not already signed the petition, please do so by clicking the links below. If you have already signed it, I thank you for your action, but ask you to please forward this email to family, friends, and anyone who might be interested in signing it.

Help me help the PCa community and sign the online petition NOW

David

The times they are a changing, again.

 The times they are a changing

I'm a little late in getting started with the blog this month, but after today's Oncologist appointment, November is certain to be full of updates.

My PSA is up from 36 last month and now sits at 52.

This is not the news I was looking for at all. It seems that after seven months DES (estrogen) has run it's course. Though I am feeling fine, we now find ourselves at a crossroads once again. We have several options we are going to pursue and the plan is to review these with Dr. V when we meet with him next Monday.

One option is Provenge. I have written about it here before, but at a high level it is a new and emerging class of drugs called 'Immunotherapy'. Provenge is administered in three treatments over a one month time frame. With each treatment the patient spends several hours having their blood cells extracted through a process called 'Leukapheresis'. The extracted matter is sent to a laboratory where it is merged with Provenge, fermented and three days later sent back to be re-infused into the patient. There are two outstanding issues with this option: Will insurance pay for it? If so, can we find a location with supply such as Omaha or will we have to travel further? (the drug was just FDA approved in April and remains in short supply until next year)

Another option, and the one we prefer, is a drug still being evaluated in clinical tests called Abiraterone. The latest news from Johnson & Johnson is available here. Again, at a high level;  Abiraterone acetate is a novel, targeted, investigational, oral androgen biosynthesis inhibitor being developed for the treatment of metastatic advanced prostate cancer that has progressed after developing resistance to conventional hormonal therapies. This is also known as castration-resistant prostate cancer (CRPC).
 
There is a Phase II trial I might be eligible for but we'd have to travel to San Francisco a number of times.  Additionally, Abiraterone is also going to be made available through expanded access, as a non-blinded Phase III trial, but the timing for that approval may be longer than we are comfortable with, as it could be late December or into next year.
 
There is a third drug called XL 184 that I found out about through friends at the Prostate Cancer Foundation. Once again, there is a timing issue and an eligibility issue with my specific case.

All of this will be reviewed on Monday.  After we review the options with the doctor, we will make the decision we feel is best at this time.  The bad news is the test score and the increase in my PSA level. The good news, if you can call it that, is that we have a few options in front of us.  The challenge with the options is the timing and availability of the drugs.  Treading through the gray area of decision making is always a bit stressful, but we choose to remain positive and continue to have hope and faith that we will select a treatment that responds favorably.

The captain of my soul

While reviewing one of the on-line forums I follow, I responded to a post with the following:

Worry and what ifs can be all consuming and at some point we have to look forward and go live!

My response was directed to a man who was recently diagnosed and was asking about how long he had and whether we knew of anyone with stage IV PC who had been cured. At one time I was where he is, caught up in the wondering and worrying about the future. At some point I learned to just live. For the most part one day at a time, but I'd be lying if I said I don't think about the future. Looking ahead yes, but not too far.

I received the following from Manny in Florida. There are a number of scholarly interpretations on-line, mine is somewhat different.

INVICTUS
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeoning of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

William Ernest Henley

It still doesn't suck!

Last year at this time, almost to the day, I spent a perfectly beautiful day sailing with my good friend Jim.
(I wrote about it here: http://prostatecancerat42.blogspot.com/2009/10/it-didnt-suck.html )

 

So this morning, one year later, in a boat with a few more feet in length and weather that was nearly identical to last year's, we set off for four hours of perfect sailing. When I left the house the overcast was thick and gray but when we arrived at the Lake Perry Yacht Club at 11:15, the clouds had began to break. As you can see by the pictures above, within an hour we were enjoying a steady 10-12 MPH headwind, blue skies and seventy degree weather.

Due to my medical condition du jour (blood clots in my left leg) I was more passenger than captain but it is impossible to complain after the way it turned out. We enjoyed a Chiefs win on the radio, lunch on the boat, and a considerable amount of Jimmy Buffet as we covered at least 17 miles.

Thank you is not enough Jim.  Next year let's make this a monthly event!

Here I go again

The irony in the title is a friend posted the video for this Whitesnake song on Facebook earlier today. Little did I know how appropriate it would turn out to be for my day.

Seems I've once again got a little issue with blood clots. My left leg has been hurting since the weekend and at first I just assumed it was due to the the massive amount of yard work Rich and I put in the last two weekends. After a drive down to the Radiology Dept. at KU Med Center for an ultrasound, it turns out it wasn't a muscle pull, but what was described by the doctor as an extensive series of blood clots down my left leg.

I knew where this would end up...back on Lovenox! See posts from August 2008, I've been here before!  I didn't enjoy it the first time, and certainly was not hoping for a second round!  So for now I begin the regimen of a self injection into my stomach, twice a day.

On the upside, at least we knew that blood clots are a potential side effect of the DES and went and had it checked out.  My next appointment with my oncologist is two weeks from Monday, (Nov 8th) and we'll discuss potential treatment options.  A decision we knew we would probably have to make in the near future, it looks like now it will be sooner, rather than later.

'Ladies and gentleman, we're going to be here awhile'

The title is a frivolous attempt at humor, but it appears we are in another holding pattern.

With all of the information that continually bombards those of us dealing with PCa, it was good to hear the doctor from Boston say this today, “You have done a remarkable job of managing your case by not panicking and constantly switching protocols. You have managed to survive longer than the average, longer than most,and in very good overall health!”. This is not the first time we have heard this.  We also heard it when we visited MD Anderson in April 2009. It tends to make me puff out my chest when two of perhaps the top five Prostate Cancer researchers in the country reaffirm that we have made the right decisions throughout my treatment process. Long term, things are bad, but they could always be worse.

After reviewing my chart and discussing my case for 15-20 minutes, the doctor informed us that I am not currently a candidate for XL 184 (A requirement for the trial is that lymph node and/or organ involvement would need to be present in addition to the bone metastasis). Believe it or not, I was not discouraged, mostly because of the doctor’s words and presence. He was unbelievably gracious and supportive.  He encouraged us to stay in touch and invited us to confer with him again before we make any treatment changes in the future.  He also reminded us that clinical trials change and my condition might change as well.

I obviously am not a doctor, but my experience with this journey tells me this, because my treatment options are limited, I have to get the most out of each treatment. When making  the decision regarding when it is the best time to alter treatments, I believe it is a combination of considering quality medical advice, PSA doubling times, scan results the patient’s overall health and how he is feeling and then following your personal instincts.  That has been our approach, and so far, so good!

With XL 184, we were just trying to line up another option. XL 184 is targeted directly to the bone tumors, which peaked our interest in this relatively new treatment option. When the time comes to choose the next treatment regimen, we plan to have two or three options lined up, Provenge, Abiraterone, or maybe this newer drug XL 184.  It is truly a luxury for an advanced prostate cancer patient to have treatment options after being diagnosed almost 6 years ago.

The good news, and this is sometimes hard for me convey in words, is that unlike when I started this journey,there are more options. Five years ago my next step would have been to try chemotherapy again. Since it didn't work as well as we had hoped the first time, the chances of it working a second time are not very good. Now, in late 2010, I find myself with three potential treatments.  It will be a difficult decision, but it won’t have to be made until sometime in the future.  Once again I find myself sleeping well and remaining encouraged that in the midst of my chaotic life, things are very encouraging!

And yet another

Friday was both my monthly appointment with my oncologist and a periodic bone scan. This translated into an entire day at the cancer center. We left the house a little before nine and we didn't get back home until nearly six.

It provided a chance for a lot of together time for Mary and I, as well as time for a lot of people watching. NOTE: I swear Lady Gaga walked into the Starbuck's on the Country Club Plaza!  We both got a laugh from this one! We also observed the typical jackass at the cancer center. This is the type of patient that visibly expresses their fear and concern through one of those permanent pissed off looks on their face. They follow that up with harsh words for the poor lady at check in and the cherry on top is when they make comments that clearly articulate the fact they certainly didn't listen to a word of the instructions they were provided explaining the CT scan process. The prime example is the statement he rudely yelled at the admin person behind the desk, "No I haven't received any liquids to drink, I'm here for a CAT scan, why would I have to drink anything?". OK Einstein, I'm going to speak real slow so you can follow along.....you must drink the liquid in order for the scan to capture the pictures of your insides!

Sorry, but sometimes rude, ignorant people just get to me. Back to the matter at hand, my status update....

Every time I have a bone scan Mary patiently waits in the reception area and when I come out she asks me 'what did you see? How did it look?' Usually there is not much to report, and there didn't seem to be this time either. However, after having radiation treatments back in June, I had expected much less visible activity on the monitor than I began to see as the scan was about half way over. There was a clearly visible spot on one of my hips. I'm not sure that it is more or less than March, but as I said, it was more than I expected to see.

Dr. V then provided this update; my hips and legs are 'stable' when compared to the last scan in March. I was hoping they were better after having radiation treatments in June but stable beats the alternative! My PSA however was at 35.08, up from 28.69 last month. Not too much of an increase, but not lower.

We spent considerable time discussing a new trial that was recommended by Dr. Simons of the Prostate Cancer Foundation. When I was in Washington, DC he mentioned that I should look into the trial and discuss it with my local Oncologist. There are three sites he recommended; San Francisco, Ann Arbor and Boston. At this point we are leaning towards Boston and hope to connect with the doctor there this week. Dr. Simons was kind enough to provide us with the contact information for all three centers.  We have selected Boston and have sent an email requesting to be considered for the current trial. The drug is called 'XL 184' and is specifically being used to target cancers that have metastasized in the bone. 

I'll post again as soon as we talk with the doctor from Boston.

The silence is deafening....

Earlier last week the Prostate Cancer Community lost another wonderful man, Howard Hansen.

Here is a brief synopsis of Howard and his work from the website he managed (http://www.hrpca.org):

Hansen has battled prostate cancer since 1993 and he co-founded Hormone Refractory Prostate 
Cancer Association (http://www.hrpca.org/), an independent nonprofit, more than 10 years ago. The association operates through the HRPCA.org Web site and through an email-based support group. Hansen and other volunteers provide information that helps patients manage their disease thereby maintaining their quality of life. The group of cancer patients also shares the latest medical literature on the newest treatment opportunities and strategies to aid them in discussions with their oncologists.

I never met Howard or even spoke with him on the phone but we exchanged a few emails and I read every post he sent to the Prostate Cancer support message boards. He was a wonderful resource and will really be missed by both us seasoned veterans and those that are newly diagnosed.

God bless you Howard, Joan and your entire family.

14 years later

Last month we celebrated a birthday. Our one, our only, turned 14.

Wow, that just doesn't seem right. When this journey, this part of my life began, he was but 8 years old, truly a boy. Now, six years later he is without a doubt, a young man.

What the future holds I don't know, but do any of us? At one point I had created a list of the things I wanted to do or see before PCa takes me. I looked but could not find the particular post.

I know a few of them are about to come to fruition;
- he will start driving, real soon, too soon!
- he will start high school, now less that a year away.
- girl friends and heartbreak are going to happen soon as well.

Graduation, college, marriage and blessing us with grandchildren are way, way into the future. I do feel much more comfortable today than I did last year and the previous four that I will get to share some of these milestones in his life.

God has truly blessed me with my great family and an absolutely wonderful, beautiful son.

Friends, family, strangers and enough nature to fill a book

Seriously! Has it really been almost two weeks since I posted an update?

I guess that makes sense because after my last post we had a golf tournament, a house full of friends and family and I spent last week in northern Wisconsin.  Time flies when you're having fun....and yes, I have been having fun!

The golf tournament once again went off without a hitch. The weather was absolute perfection and as always the support we received left me grateful to my family, my friends and the kindness of complete strangers. I won't have a total for a week or so but I am still hopeful that our donation to the Prostate Cancer Foundation for 2010 will be really close to $40,000. The majority of the funds raised are from the golf tournament.

My brothers and dad came over from St Louis along with other friends and family. This year I was once again honored with the presence of my dear friends Bill who travels all the way from southern Maryland and Bob who comes in from St. Louis. This year we had an extra day and we caught up and reminisced about 'the old days'. The stories we have...wow!

Sunday after everyone had returned home, Mary and I decompressed and straightened up all the odds and ends from the golf tournament. Wasting no time, Monday morning I jumped on a flight to Milwaukee, along with my brother in law, Rich and we were off to Minocqua, WI for five days of fishing and disc golf. Fall had already descended on northern Wisconsin and the trees were post card quality. The nights by the fire pit were chilly but the stars and meteors were a constant reminder of the higher power watching over me. The sky is so clear that sitting on the dock you can actually see the Nebulous.

 

This is doctor appointment week.  We are a little early this month to accommodate Dr. V's travel schedule.  I will have my monthly blood test and a bone scan on Friday.  More on that tomorrow or Thursday.

Six is magical

Tomorrow at this time I will be knee deep in getting the 6th Annual FLHW Golf Tournament off the ground. God has once again promised us a perfect day of 75 degrees and no rain! We're six for six when it comes to the weather.

This year we find ourselves in an interesting spot; the number of players and teams is down slightly, we'll have 31 total, but the number of sponsors and donations are up quite a bit. At times like this I'm so overwhelmed with others generosity, and I'm not sure what to say that will adequately express my appreciation. So I try to just smile and thank them once, maybe even twice, but it never seems to be enough.

In a few hours I'm off to the airport to pick up one of my life long friends. We go back more than forty-two years. He sacrifices a weekend from his wife and daughters each year, flies across the country and spends it with us. In addition a number of family and friends will come to Kansas City from St. Louis to spend a few days here as well. I'm not sure I can find words to appropriately thank them for their support and participation as well. I am truly blessed to be surrounded by friends, family and even strangers, all helping me do our little part to rid the world of this awful disease.

I've said before that since I was diagnosed, I didn't 'get' cancer, God 'gave' it to me and it is up to me to figure out why and what to do with it. These examples are just a few of the many I have experienced in the past five and a half years that lead me to believe I'm getting closer to figuring it out.

My visit to The Hill

Earlier this week I had the honor of attending the 2010 Summit to End Prostate Cancer. This annual event is sponsored by ZERO (zerocancer.org), an organization that focuses on lobbying Congress on behalf of prostate cancer.

The 2010 Summit focused on effective strategies for increasing the federal investment in prostate cancer research and on the last day of the Summit, we had the opportunity to meet with our elected officials on Capitol Hill.

There were hundreds of people present, primarily survivors, their family members and advocates. We came representing the hundreds of thousands of survivors and family members whose voices are not heard by our elected officials.

Although the US government has spent hundreds of millions, perhaps billions of dollars on prostate cancer research, it's not enough.  In order for a cure to be found, the research must continue to be supported. With 217,000 men diagnosed each year, the need for a cure cannot be denied. The most impressive presentation for me was given by the Program Manager for the Department of Defense Prostate Cancer Research Project. Her project is funded annually with $80 million dollars. Though this is a considerable sum of money, the amount has remained flat for the last five years and is actually down from $100M from the proceeding four years. This is a travesty, we aren't even keeping up with the rate of inflation. As Ms. Best explained, this leaves her with no choice but to fund fewer research projects on an annual basis.

For me, I departed with the feeling that it is all moving at a snail's pace. It's like watching paint dry or grass grow.

I was forewarned that I would in all likelihood just be meeting with staff members of the two Kansas Senators and our Congressman. My first meeting with Senator Roberts was in fact with his staff. Both ladies were very cordial and took rather extensive notes during the meeting. The Senator however is as fiscally conservative as I am, so am not sure my meeting will make a difference.

My second meeting with Senator Brownback began with a senior staffer but much to my surprise, after two minutes, the Senator stuck his head into the meeting room and asked what we were meeting about. When I replied prostate cancer, he shut the door and joined us.

For the next 25 minutes I had his undivided attention . He was truly interested in my story and expressed sincere empathy for both me and the prostate cancer cause in general. We also spoke about how cancer changes you, in our cases, for the better.

When I flew home a few hours later it turns out he was on the same flight. At one point during the flight he recognized that I was four rows back and took a few minutes to come back and thank me for coming by and sharing my story and concerns with him. We may never see each other or speak again, but I felt like I had made a friend and my message promoting the importance of research for a cure for PC was definitely heard.

In addition to the Senator, I made a number of other new friends from Charlotte, Austin and a number of other locations. Washington is a beautiful city but the inner workings of the federal government would be a bit too frustrating for me.

Once again, many, many thanks to Skip and everyone else at Zero!

Two years and nine months ago

After five and a half years and nearly 550 entries you can probably imagine that there are many, many times that I struggle to come up with a subject that is even faintly interesting. This is particularly true when things are  going well medically. This is one of those times.

Monday was my recurring four week appointment with my oncologist. The results were once again favorable, my PSA is down again and now stands at 28.69!  A reason for celebration! I just checked and this is the lowest level since December 2007!

I woke up Tuesday morning and thanked God, for a number of things: Mary, Brad, the support, love and comfort I receive from friends, family and strangers, and finally, a win by the Kansas City Chiefs! I try, most of the times rather feebly, to explain how much the process of living with this terminal disease has changed me. I look at things so differently and I hope some of you can see the changes through my actions and how I live my life. I am certainly not saintly, without sin, or without set backs, but I try to live a life that is more balanced and less stressful.

Less stressful you might be asking...How is that possible when you are living with a cancer that will, without a miracle or scientific break through, ultimately take your life? It's really no secret, just don't sweat the small stuff. On a daily basis nothing is going to transpire that will make a significant difference in the outcome. Eating right, exercising, remaining spiritual, are all required, a given if you will. So enjoy the little things, stop and smell the roses.

I'm back!

Of course, as always, the title of this post signifies multiple references.

First up, I played disc golf both yesterday and today. Though I played well yesterday, today I was challenged by a course I have never played before and I stunk it up! I was even after five holes but the wheels fell off. Regardless, it was fun to be out again and play with Eric, Pete, Tim and the four Steves.

Next, and more importantly, tomorrow marks twenty eight days and that means it's time to go see Dr. V. I feel really, really good, but as always, that doesn't mean a thing. The routine will be the same; visit the lab for blood draws, infusion area for a Lupron shot and Zometa infusion then off to see the doc. You would think that after five and a half years (67 months) I would be used to this uneasiness. I'm not sure I ever will be comfortable before these appointments. So, I take a deep breath, enjoy the opening weekend of the NFL and try to get a good nights sleep. I can't control what happens tomorrow, it is and remains in Gods hands.

In addition to the doctor tomorrow, we have an unbelievably busy two weeks ahead of us. I won't bore you with the details now but I will provide updates as things progress. We are very much looking forward to the 6th annual FLHW golf tourney, which is now less than 2 weeks away.  No rest until the 25th!!

Time flies....

Dear Blog,

Sorry I have neglected you. One would think that being without a job I would have all this spare time on my hands.  One would be wrong in this instance. I vow to recommit myself to more frequent and substantive updates. To that end, I have just created 5 drafts, including this one. There is a lot going on in my life as I fight this dreaded disease on a daily basis, and sharing my trials and tribulations will once again become a priority.
~~~~~~~~~~
In addition to preparing for our upcoming FLHW golf tourney, I have spent some time over the last month helping a friend launch a new website. This even included a few days in Boston to help him with a conference/expo. The website is focused on helping amateur MMA (Mixed Martial Arts) fighters train better, as well as to help promoters and the State Boxing Commissioners identify qualified fighters. I don't have much interest in the sport overall, but the business plan is pretty solid. I wish my friend great success wit this endeavor. My involvement centers around marketing social media (Facebook, Twitter, blogging etc). It's a lot of fun and I may have recruited another disc golfer while we have worked on this project together. The website is www.mmaally.com if you are interested.

My job search continues. When I became a 'free agent' on July 1st I had planned to take July off. Well July ran in to August and the next thing I knew it was September 1st. So I have started seriously looking and leveraging the resources that were provided by my former employer and that is where I currently find myself. My resume and background are available at linkedin.com.

More to come over the next few days. Have a great week-end!

O summer, O summer, where art thou?

Seriously, it's August 31st? Where did this summer go?

For me it began in the abyss. After a serious flare up of pain and wide spread tumors in my hips and thighs, I had my first experience with radiation treatments. In the end, it wasn't so bad and the pain relief came almost immediately.  Fatigue, a slight skin rash, and gastrointestinal problems were primarily the only side effects we had to deal with.  Thankfully the radiation was effective and my PSA as well as the absence of pain is proof positive that the treatment regimen was a success.

By the end of June, I was 100% better but found myself without a job. I knew it was coming. It was not a surprise, but the reality can be eye opening. Mary and I agreed I would take July off, which has expanded into August, but now the search begins. I have been busy with the foundation as well as lending my skills to a friend who is starting a small web business. Time is flying by, so I need to bump up the career in the priority list once again.

I still have two weeks until my next Oncologist appointment, however I feel great. 'Keep on keeping on' is the current mantra.

This week I can finally return to the disc golf course. I will have to take it easy the first few times out, but I cannot convey how excited I am! The hardest thing is going to be easing my way back into it...I have a lot of pent up adrenaline and I am mentally ready to go!

Updates will follow as always, that is all for now, hello September!

Beach bum

We spent last week in Naples, FL
It was delightful and just what we needed to end the summer.

I was supposed to see Dr. V for my monthly appointment on Monday, so we had to do some shuffling of appointments.  Last Friday I had my Lupron shot and Zometa infusion, as well as the necessary blood test. Being that it was Friday the 13th, I was leery to get the results. Mary wanted to see them before we left for the trip, so on our way out the nurse printed us a copy.

My PSA dropped another 40% and now stands at 30.8.

This is the lowest it's been in two years!  Let's hear it for the radiation treatments!!

This news made it much easier to get up on Saturday morning before dawn to catch a 6:30am flight to Fort Meyers! We then proceeded to enjoy our time in Naples.We didn't do much except eat, lay by the pool and sit on our balcony and listen to the surf. It was fantastic.We took a trip down to Marco Island one day and another day drove up to Sanibel and Captiva.

Since returning home, we checked in with Dr. V, but it was a very short visit given the PSA result.
So now we transition back into school mode and planning for the upcoming golf tournament. In addition,
the job search continues. I've applied for a few positions of interest and even had a few phone interviews
but nothing solid has surfaced yet.

For now we will attempt to enjoy a few good weeks on this crazy ride that is our life!

Great Prostate Cancer Challange - Kansas City

For those of you in KC, here's a great walk/5k that you should put on your calendars.
Mary and I participated last year and really enjoyed it.

I hope to see you there this year!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Date / Time
Sunday, September 19, 2010 @ 8:00 AM
5K Race and 1 Mile Fun Walk - 8:00 a.m.
On site Registration - 7:30 a.m.

Address
10701 Nall Ave, Overland Park, KS
Northeast corner of I-435 and Nall in Overland Park, Kansas

Registration Closing Date
Pre-registration via website through Wednesday, September 16, 2010.
On-site registration Sunday, September 19, 2010 beginning at 7:30 a.m.

• $20 Pre-race registration
• $25 Race-day registration
• $10 Fun Walk

Entry fees are non-refundable

Brief Description
Join us on September 19, 2010 for the 2nd Annual Great Prostate Cancer Challenge® in Kansas City to benefit ZERO — The Project to End Prostate Cancer. In the inaugural race last year Kansas City Urology Care donated $10,000 to ZERO and $5,000 to the Kansas City Prostate Cancer Foundation.

We are passionate about prostate cancer! We are dedicated to helping fund research and educating the
Kansas City Metropolitan area about prostate cancer. Help us make this passion come true. Sign up today
to run or walk.

Information and Sign-up

Keep on keeping on

I don't think the nervousness ever goes away? Does it? It' been five and a half years and I still get a little nervous before going to the doc. It's probably the worst when those visits involve blood tests and a PSA test in particular.

Today this feeling isn't as bad as it has been at other times. I'm still feeling really good and the side-effects of June's radiation treatments is completely gone. I still have to forgo strenuous physical activity for a few more weeks, this will make today's charity golf tournament, in the 99 degree heat even more fun. It's for a good cause and I really hope my putter can help contribute.

Summer has evaporated and school starts in less than two weeks. Eighth grade for Brad, I can't believe it!
-------------
Post script: 9pm
My PSa test came in at 30, down another 40% from last month! It hasn't been this low in almost two years. Wow, did that make my day.

I followed that up with a great day on the golf course. How insightful the note from this morning (above) turned out to be: I won the longest putt contest (a 50 footer) and made two others from over 25 ft.

I guess for once I need not say more.

There are times when you just have to pray, and hold on

If any of you have watched the recent HBO mini series, The Pacific, there was a quote I had written down from Episode 2. I'm not sure the exact context of the statement. The series, produced by the same team that produced 'Band of Brothers', provides a glimpse of what these wonderfully brave men went through in order to defend our country. It's rather gut wrenching at times.




The quote, "There are times when you just have to pray, and hold on", stuck with me.With treatment and a doctor appointment coming up once again, I find myself in the 28 day funk I have mentioned here before. These four weeks between appointments just seem to fly by some months. 


I'm feeling great and believe, as Dr. S pointed out, that the radiation continues to provide benefits. Even with his recently positive comments, I don't know what will happen next week, next month, or next year, but then again, do any of us? 

No worries, I'm fine, it's just one of those moments when I find myself holding on and praying.

September is Prostate Cancer Awareness Month- act now!

SEPTEMBER IS PROSTATE CANCER AWARENESS MONTH:
Write your Senators today to support PCAM

This year more than 32,000 men will die from prostate cancer, but we can all help to reduce deaths from prostate cancer by raising awareness and educating men about prostate cancer.

Prostate Cancer Awareness Month is our chance to make a major impact in public awareness about the need for early detection, awareness and outreach.

S. Res. 597 was introduced last week with 28 co-sponsors in the Senate to show that our federal legislators are working to spread the word. Help us make sure that all 100 of our Senators pledge to help our cause!

Click Here to write to your Senators today and ask that they co-sponsor S. Res. 597 designating September 2010 as “National Prostate Cancer Awareness Month.”

Thank you in advance for taking action and being a difference!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
http://www.zerocancer.org/index.html
Copyright © 2009 ZERO - The Project to End Prostate Cancer. All Rights Reserved. ZERO does not endorse any course of treatment for men with prostate cancer or other conditions. Treatment decisions should be made by a patient and his health service provider. All names, logos and articles are the copyrights of the respective owners.

Bliss equals this

I'm sitting here on the deck this morning trying to come up with something creative to post? You see, tomorrow is our nineteenth wedding anniversary. I think I was trying to hard, it was right there in front of me all the time.

The picture above was taken at a wedding two weeks ago. It was one of those pictures where you hold your cell phone at arms length and hope you capture a half way decent shot. In this case it was absolutely spot on!

The picture is almost as perfect as her. She is truly and honestly my best friend. I would be a shell of who I am today without her. On one hand, nineteen years has gone by in a flash, on the other, it is filled with so many, wonderful, beautiful memories.

As you might be able to imagine the last five years have been particularly stressful for us. Through it all she remains hopeful and positive. While this may seem expected in a spouse, I know through this experience and meeting other couples battling PCa that it is not always the case. This disease is not only mine, it is ours. With that burden I have yet to hear complaints. Yes the occasional 'I wish there was a cure' or 'I wish the FDA would hurry up and approve that new treatment.' As it relates to us and our battle, she is, as I have mentioned here before, my Gibraltar.

No relationship, friendship or partnership is perfect, but if this is wedded bliss, I'll have another helping please!

What lies ahead

Time off - When my severance began on July 1st, Mary and I agreed that I would take the month of July off. Well, here it is the second to last day of the month and I can't believe it is already over. Even though I wasn't actively looking for my next career, I do have a few irons in the fire. Nothing concrete at this point, but it is nice to know that in this economy, I am at least able to find some potential career opportunities. 

In the mean time I have been keeping myself busy helping a friend set-up the social media aspects (Twitter, Facebook, etc.) of a new business venture. So far I've really enjoyed it and more details will be forthcoming.

Some time away - We have been promising Brad we would take a family trip before school started. I've been looking around and gathering ideas but nothing is set yet. Regardless of the destination, it will be good to get away for a few days.

In September I will be traveling to Washington, DC for a Prostate Cancer event. The basic premise of the event is the opportunity for myself and others to encourage our State's members of Congress to further support Prostate Caner research funding. It's an event I have tried to go to in the past but it has never fit into my schedule, I'm very excited about this opportunity!

Later in September there are two events that involve FLHW and Golf. One is a customer appreciation event for a local financial services company and FLHW is the benefactor. Though this is their first year, it has the potential to become an annual event and I am enjoying helping them plan the day and certainly appreciate the fact that FLHW was selected to benefit.

2010 FLHW Golf Tournament - Just in case you haven't heard, the date of our 6th annual golf tournament is Friday, September 24th. There are more details on the website about sponsorships, or if you are ready, you can pay for a player, a team or sponsorship ~ yes, right on the website: http://www.flhw.org/2010-events.html

We are always looking for sponsors and donations for the raffle.  Please let me know if you have any interest or business contacts for either.  We really do appreciate it!  A few businesses have already stepped up and after some recent publicity on television and on the radio, I have several leads that I will to follow up on. This year we are thinking about selling the tournament hats we have made ever year. If you are interested, please send me a note. I should have a definite answer on the color, style, etc. in the next few weeks. I will add the ability to order from the FLHW website.

As we have in years past, we are sure to attract a full field of players weeks in advance. It's an exciting day and always a great opportunity for us to catch up with friends and family, as well as to make many new friends through this journey. 

Warrior = friend, family member, stranger, hero.

We, the FLHW Foundation have sponsored close to twenty events over the past five years. Yesterday, we took a risk and it paid off way beyond our expectations.

The first annual 'Warrior Combines' is in the books. Sixteen Warriors participated, competed and sweated their hearts out. I personally want to thank each and every one of them, from the bottom of my heart.

I would also like to extend my thanks to all the others who offered their support through the purchase of t-shirts, towels and donations. Although we don't have the final financial results, we believe the results of this event will be another $1,500 that FLHW will be able to donate to support research for improved treatments and a cure for advanced prostate cancer.

Additionally, we were able to promote an awareness of prostate cancer and the importance of early detection to the Kansas City community. With the help of a new friend that I met through Facebook, we were very fortunate to have the local Fox station broadcast live news remotes from 7-9am Saturday morning. I was interviewed for three different live shots. Each interview was approximately two and a half minutes and went really great. The reporter also packaged up some of the video into a segment that ran on a few more broadcasts Saturday night. A link to the package is below. I'll post the interviews once I figure out how to get them from my DVR to my PC.

Click Here

A few months ago, I was contacted by a stranger who was the creator of the combine event. Today I have what I believe is a true friend for life. If it weren't for Jason, this idea would have never have come to life. After yesterday, he and I have big plans for future events! Mary and I sincerely appreciate his energy, time and commitment to making the event a success. We are once again blessed to encounter such an exceptional person and are grateful for his support for our organization.

Conceptually, we thought the combine event would be fun and different, but the day proved to exceed all of our expectations. Once again, thanks to all who supported this event!

As the roller coaster turns

As I have shared here before, this journey is if nothing else, a roller coaster ride.

Today, was the good part of that ride. For some that could mean, the point when the coaster pulls back into the station, for me, it's that part of the ride when you are dropping down the largest hill. That weightless, out of control feeling that for lovers of coasters, like me, you look forward to with anticipation. That anticipation was how I approached today's doctor appointment. I knew that after radiation last month the chances that my PSA would go down were pretty good. However, I had no idea what the decline might be and was cautious to not expect too much!.

Last month my PSA was 107.00.

Today it was 54% lower, or 49.89.

Wow, that is cause for celebration, even a slight one. After 19 years of marriage, and after five years of this ride, it wasn't like we were going to jet off somewhere tropical to celebrate (as nice as that might be!), but we did take some time to enjoy the day, to enjoy the news, to share the joy.

We never, ever know what lies ahead, but who really does? The difference is for the rest of you planning your life six months from now, or a year from now, it is not a stretch or an act that would seem foreign to you. For us, we celebrate this day, but right there in the forefront of our minds is that we know that 28 days from now, it all could change once again. All we can do is pray that what lies ahead is yet many more hills on this roller coaster ride.

It's out there, not in here.

I started to compose this a week ago or so after I woke from some very sound REM sleep. I woke that morning with a thought in the forefront of my mind.

Regardless of religious beliefs, and for those of you that have none, just ponder this, give it a thought. I am not professing to be some deep thinker, this was on my mind and so I share it here.
~~~~~~~~~~~~~~~~~~~~~

"Our purpose is out there, not in here."

Now what the heck could David mean by this simple thought? Take both your your hands, cross your arms and place them on your heart, this is the 'in here'. Now pause and give that some thought. Keep your hands there and think about who you are and what your life is about. What drives you? Do you have a cause or purpose you really care about?

Now, take your arms and open them wide, hold them out in front of you. This is the 'out here'. What are you here for? What are you doing for others?

Selflessness vs selfishness.......

I have met a number of people in my life but at the top of mind are those I have met on this journey. Those that give to and help with this cause simply because they are thinking and acting with their arms extending in front of them. These people remind me of how blessed I am.

~~~~~~~~~~~~~~

Tomorrow is my 4 week appointment with my Oncologist. I am hopeful my PSA remains in check, and perhaps may have decreased due to the radiation treatments last month. The following Monday we will meet with my Radiologist to review the details of the radiation.

How long?

Wow... 12 days ago? Really?

This gap in my blog is yet another example of the ups and downs of this battle. Last month I was at a low point, one I hadn't seen in years. Pain, radiation, pain pills, it can all become a little overwhelming. Throw on top of that, the conclusion of a 20 year career in telecommunications and you get a glimpse of where I was by the end of June.

Well a funny thing happened over the last few weeks, one of my favorite old feelings, contentment creeped back in the picture. As has occurred previously, in the midst of my chaotic life, a peacefulness, the ability to be at ease with what is going on set in. On the health front, the radiation did what Dr. S said it would do, it completely relieved me of pain. Given that news, I've been off pain pills for three weeks and I am not even walking with a limp. When it comes to a job, well I said going in that I was going to take July off, and then worry about it. I am very fortunate that I have severance pay and benefits until next April. I also have an opportunity to do some contract work, which provides me more piece of mind. I have faith in the saying, when one door closes, another one opens.

This is all I have for now, I promise to try to provide updates more frequently over the next few weeks.

Summertime

Summer is flying by, school starts in a little over five weeks!

With the end of baseball season next weekend I need to find something to do with Brad for a few days and a family trip we can get in before the middle of August? Let the planning begin!

It's good to feel good!

It's a good news, bad news thing.....

I've written here are a few times about a recently approved and very exciting new treatment for advanced prostate cancer, a drug known as Provenge. Well it seems the demand is far exceeding the company's capacity to keep up. This is something I saw first hand back in March and something that the company has been very clear about since the FDA approval in late April.

From Bloomberg: Rationing of Provenge

It's just kind of sad to see in writing and know that even after Dendreon expands their existing facility and opens two others by the middle of next year, it will take some time to clear the back log of patients.

By the way, the title had nothing to do with my personal situation. Yesterday I received my 14th and final radiation treatment. For the most part the whole process was easy. I had some increased pain the first week and was rather fatigued as well. I have however been completely off pain meds for a week now and the fatigue is in the past as well.

We met briefly with the radiation oncologist and I can begin to exercise again but to avoid any exercise involving my legs for the next few weeks. Walking will be fine, but I have to avoid sit-ups so there goes the six pack abs I was working on! Disc golf of course is still a non-issue for at least two months, that is a hard pill to swallow, but I am very thankful that the pain is gone.

It is for her....

It is for her...

It is but your beauty
that which awakens me
and guides me
throughout my day, my life.

It is but your smile
the look in your eye
as you look upon me
the look that inspires me
and retains my desire to go on.

It is but your love
for him, for me, for us
the love that shines
for all who encounter you
The love that I cherish with all my heart.

Ooops, where does the time go?

Sitting here watching the US Open, it suddenly dawned on me that it had been awhile since I posted. Not only had it been nine days, but so much has happened. Once I explain it all, my negligence will be understandable.

After my first three radiation treatments, basically over last weekend, I found myself once again in some considerable pain. The odd thing is that the pain on my right side, which initiated the radiation treatments was completely gone and now it was my left hip and femur that were causing discomfort. It was not nearly as bad as what I had been experiencing with the right side, but it was pretty darn close. Sleep was tough because I could only get slightly comfortable on my back. Using the Oxycodone every 4 to 5 hours, I was able to get through the weekend. On Monday I went in for my 4th radiation treatment and met with the Radiology Oncologist. I left with a prescription for 12 hour, time released Oxycontin. What a God send! I've been sleeping great since and was even able to return sleeping on my side that first night. Two days later I completely stopped taking the other pain medication during the day, so I now only need it at night to get some sleep without interruptions from pain.

Today I spent most of the day in the yard. My contribution was minimal, but I was able to pull a few weeds, stake and tie up the tomatoes and provided a slight bit of help to my brother in law as he worked feverishly through the heat of the day to replace some wood trim on the house.

On a related note I discovered something today; there are times when you just have to step back, face the facts and let people help you. I have always been the type to help friends, family, etc. Whether it be with a project in the yard, repairing a computer or whatever, I really take pride in lending people a hand. I however find it difficult to ask for help. Rich taught me something today, other people like to lend a hand as well! As I sat in the shade and watched him work like a horse, I knew how he was feeling. I truly appreciate his time, hard work and support.

Tomorrow is Father's Day, and I think I'll take some time to enjoy it! Brad is back from camp, Monday I have my monthly check up with the oncologist (hoping for another decline in the PSA!), a Lupron shot, and a Zometa infusion. After we have the visit at KU Cancer Center, Mary will take me over for my 9th of 13 radiation treatments.

Here are a few lyrics of a song I was listening to while writing this post ~

Life is a carnival
It's in the book
Life is a carnival
Take another look

When things get serious, it's time for some silliness!

After today, and for some unknown reason, I'm feeling a but childish tonight! When you get through reading this update, you will probably think I've lost it. After five years, actually 64 months, nothing about this whole ordeal will EVER get me down. I say that with complete confidence, it will not!

First off, while searching for another video I ran across this classic. This is back from the days when cartoons were cartoons. Enjoy, perhaps it's inclusion here will make more sense if you first read further.



Today, if nothing else, should be described as a whirlwind. At 9:00am we had an appointment with my Radiology Oncologist and by this afternoon I had already completed my first radiation treatment. I guess some details would help?

First, before I forget, the steroids are working, I went 19 hours between doses of pain pills! Better ye,t the steroids did not keep me awake last night, I slept for seven and a half straight hours!

Our meeting with Dr. S was great, as I've said here before, we have been lucky to have always found wonderful doctors throughout this whole journey. Dr. S is another example. Initially, he spent 45 minutes going over the details of the MRI. I created a picture on my iPad to illustrate what I am about to share. Please look up at the title of this post if you have any doubts about the quality of the picture!
Here's what you are looking at and what we discussed. This is my legs and torso, my femurs are black, my bladder is red. I'll start with the bladder and the green meanies. The green areas are swollen, cancerous lymph nodes and this is not good. They are not only pushing against my bladder but they are pushing against nerves and muscle and hence, the source of most, if not all of the severe pain I have been experiencing as of late.

The gray areas on the bones are also tumors. According the Dr. S the areas further down the femur on the left in the picture (my right side) and the circle on the right side in the picture are of less of a concern. That's easy for him to say! If you think they look pretty scary in this wonderful illustration, you should see them on an MRI image! Mary and I, as you could guess, were more than a little shocked. The areas at the top of both femurs were almost as concerning, for another reason. Due to the amount of weight, stress and rotation in this area they are very susceptible to fractures and as the right side of the picture shows, I got some problems!

The good news in all of this, and believe me, there is good news, is that there were no fractures. On top of that Dr. S is 100% sure he can kill all of the cancer in each of these three areas. This will also only take thirteen radiation treatments, each only lasting about 8-10 minutes each day, and I already had one today.

A word of caution however, killing 100% of the cancer in these areas only means the cancer in these areas. It is not able to kill the cancer cells in my prostate, the area in my ribs nor all the other micro-metastasis that may be in other areas.

It also probably means my disc golfing days are over, at least for the next 3-4 months, but perhaps for good. I will be walking, keeping score and joining the gang and hope to return to doing atleast that much by mid-July. Yes, Mary, I heard him, I have to be very cautious!

Turn the page

During last month's Greenhouse fundraiser I met a great couple, the Clarks. She invited me to attend a support group they are members of and asked me to share my journey. I gladly accepted though I did so with some trepidation. Most times I can tell the story and speak of the treatments and issues we've experienced with ease. Other times it becomes too emotional.

Tonight was their monthly meeting and Mary and I fought our way through a massive thunderstorm to arrive about 10 minutes late. The meeting began with the members of the group sharing their names and their stories. I was by far the man with the most advanced diagnosis and based on some of their expressions and reactions, I think they were somewhat stunned by our journey.

On a daily basis I guess in some ways I forget everything we've been through. When I lay it out like I did this evening, and tell 'our story' it is sort of overwhelming. I am glad to report I completed the tale without getting emotional. There were a few points when I had to pause and take a deep breath.

I share all this as a prelude to the latest chapter in the journey. What I am about to share is certainly a new part of the journey.

First the blood test and MRI: my PSA was down almost 18% from the previous week! And the MRI expressed some stable area but others there showed noticeable increase in activity. The Radiologist was careful with his assessment, they always are, but this time he was comparing the MRI to a CAT scan from last October, eight months ago. The one area that was rather clear is my right thigh has a tumor that has nearly tripled in size. I wish there was more to report but that will come tomorrow when we meet with the Radiology Oncologist. It is all but guaranteed that My next step in dealing with the pain will be radiation treatments. The question remains how many? Will we go after the hips and the leg? How successful can we be without compromising my bone marrow in case I need future chemotherapy?

Only time will tell, fortunately, time in this case, is less than 12 hours.

Anyone know how to reach Kreskin?

First off, do any of you remember Kreskin? He was a psychic that occasionally appeared with Johnny Carson on the Tonight Show. He could predict events, bend things with his mind and tell the future.

I could use a bit of his foresight right now. Tomorrow at 3:00 we will meet with the oncologist to review the MRI I had on Friday. This is perhaps the most anticipated test since the beginning of this whole ordeal five years ago.

The pain ns my hip has definitely become more manageable for the most part. Since starting the pain medication last week, things have gotten considerably better. There are still incidents several times a day. I have been able to sleep fairly well each night followed by a rather normal day until late afternoon. Some days, like yesterday I might even make it as long as 9-10pm before I have an 'event'. Other days like today,itt happens between 3-5pm. I have been rather religious about taking the pain medication every 5 hours so it's not like the lack of medication brings it on. Also, I have been all but inactive so it's not like some physical action brings it on. For the most part, these pain events last an hour or more during which I cannot find a way to get comfortable. The pain leads to muscle spasms which then create muscle fatigue and other related pain.

This is probably a lot more detail than necessary but I need to share, it helps the time go by. I've watched far to many movies this weekend and disc golf is out of the question for a while. There is a very,very minimal chance this is related to arthritis, but reality and intuition tell me otherwise. If the MRI reveals a change in the tumor, or multiple tumors in my hip joint, then we anticipate the treatment will be radiation. This does not scare me at all. As a matter of fac,t I welcome it if it means the pain goes away.

Those of you that know me well probably tire of me pointing to the irony of events. I hope this one make you laugh. On Friday, as I prepared for the MRI, the technician asked if I wanted to listen to music during the procedure. Sticking with my latest musical fetish, I chose classic rock. About 15 minutes into it, what song do you think comes on? None other than the Blue Oyster Cult classic 'Don't Fear the Reaper'. I'm pretty sure the laugh that I let out was heard by the technician in the other room!

'Everybody' hurts?

First and foremost, thanks to everyone for helping with Brad, the dog, dinners, and most importantly, the thoughts and prayers! I attempt to thank you, but words fall short.

Yesterday I had an x-ray of my right hip. The result was confirmation that there was arthritis but we already knew that previously. Everything else appeared stable. My oncologist is on vacation but his physicians assistant agreed the level of pain is too great to be arthritis. So Friday I'll have an MRI then Monday meet with the oncologist to decide what to do next. In the interim, I am on painkillers to try to manage the pain. I am moving slowly and carefully catering to my right hip and leg. If the MRI confirms micro tumors, then radiation will be next. As scary as that may sound, I look forward to it as long as it relieves the pain and I can put aside the painkillers.

Overall, yesterday was the best of the last four, although getting comfortable enough to fall asleep remains a challenge. Once I do fall asleep, I have been sleeping like a baby!

In closing, a brief excerpt from from one of my favorite R.E.M. Songs....

R.E.M. - Everybody Hurts (an excerpt)

............
Everybody hurts
Take comfort in your friends.
Everybody hurts
Don't throw your hand. Oh, no
Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone
.........
Everybody hurts
You are not alone