September 23, 2010

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.

September 18, 2010

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!

September 15, 2010

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.

September 12, 2010

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!!

September 10, 2010

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.
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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!