The silence is deafening….

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.

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!!

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

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.

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.