The numbers can drive you crazy

The PSA (Prostate Specific Antigen), the primary marker used to diagnose, track and manage a patient with prostate cancer is at best a confusing indicator. There are men dealing with advanced PCa that have low PSA and high levels of pain. There are men like me that have high PSA and little to no pain. Then there are cases everywhere and in between.

Another idiosyncrasy regarding the PSA test is the differences in labs. Since I started this journey I have always been advised to stick to one lab, due to the variances in the processing between labs.  My current state is a perfect example. In January I began traveling to Atlanta as part of a clinical trial for a promising drug called Abiraterone. To date I have had three PSA tests in Atlanta and each time I have had a PSA five days later as part of my routine, monthly Oncologist visit in Kansas City.  The differences in the tests are reflected in the table below:

Date:     KC                         Atlanta:

1/27      349                         200

2/24      356                         250

3/24      403                         293

As you can see, not only does the overall number vary greatly, the percentage of change is completely different. As a patient this can drive you crazy, believe me! Mary is particularly frustrated with the lack of explanation and frankly, concern with respect to the variance in test results between the locations. However, we have repeatedly questioned it and been reassured by both doctors that it is standard practice to have a variance, sometimes even significant variance between labs. At this point in time, we don't have much choice but to accept it. Looking only at Atlanta the encouraging aspect is the trend line is slowing. January to February my PSA increased by 25% month over month. February to March my PSA increased 17%.  Looking at my KC PSA scores the January to February, the increase was only 2%. February to March my PSA went up 13%.

What does all this mean? Where does it lead? No where really. Since entering the clinical trial back in January we agreed that aside from a crazy increase (perhaps doubling) in either my PSA or excessive symptoms (pain), we would give it six months as recommended by Dr. A. With the trend slowing and pain mostly non-existent we stay the course for at least another month and God willing much, much longer. Patience is a virtue.  We are just anxious to see the PSA decrease to signal to us that we are finally successfully managing the cancer.

Serenity

It's not quite 7am, March 24th, 2011
I am writing this while in the air between KC and Atlanta as I make my fifth trip to see the Oncologist running the prostate cancer clinical trial in which I am participating.

I currently find my mind wandering to a place I've been successful in avoiding since I was diagnosed six years ago. The place I refer to is of course 'worry'. I worry when and if this current treatment will begin working. Time will tell and by late Friday or Monday morning I'll have the answer I both seek and fear.

This rant is the part I suspect is the hardest for people to understand. Perhaps I'm to blame for not spending enough time on it here. To me worry is whining. That is likely not a very good attitude to take, but I question if there is another better attitude to fight this fight with? My emotions are all over the place as you can probably tell.

I have options beyond this current medication but they are not the greatest. Two involve a return to chemo. One of the chemo options, though recently approved for use in cases like mine, is once again not a cure. There are several drugs in an earlier trial stage then my current treatment, but those become a matter of logistics since none are available in Kansas City.

Beyond the selfish worries my thoughts turn to my family, instigating additional worries. My son, being fourteen, is at a critical stage in his life. He's about to start high school and with that his world, challenges, experiences and such are set to grow exponentially. I want to be there as he matures through his high school years. Then there is Mary. Twenty-four years ago she came into my life. She is everything to me, my best friend, my confidant my heart and my soul.

We've known for six years that our dreams of a lifetime together, of spending our retirement years together were in serious jeopardy. There are times like these when it really doesn't matter that we may have discussed the changes to our grand plan, worry, pain, and mental anguish are at the forefront of my mind today. I'm hesitant to even type the words 'I want it all to go away' simply because those words ring of denial. It is what it is. I have stage IV prostate cancer, I'm struggling through a temporary funk, but I'll come out on the other side alive, mentally stronger and a better person for having gone through this experience.

A very good friend, Dr. S. and I discussed the power of the 'Serenity Prayer' once, the discussion is quite clear to me, like it was yesterday. As I write this from 33,000 feet I had to pull the prayer card that Mary had gotten me from my wallet and recite it three times. It gives me comfort right now and I would like to share it with you...

God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.
Living one day at a time,
enjoying one moment at at time,
accepting hardship as a pathway to peace.
Taking, as He did,
this sinful world as it is,
not as I would have it,
trusting that He will make things right
if I surrender to His will.
That I may be reasonably happy in this life,
and supremely happy with Him,
forever in the next.

I'm tired

I am fairly certain my friends, family, and those around me on a daily basis would attest to the fact that I’m not a complainer.  I don’t dwell on my situation or current condition, nor do I focus on the negative side of a situation, but I have to say it at least once, I’m tired.

I’m tired of:

• the little aches and pains. 
• taking all the medications.
• worrying if the current treatment is working. 
• trying to live a normal life when my life is anything but normal.
• worrying about the future, and for me that's like six months from now!
• not playing disc golf.
• the words 'Prostate' and 'Cancer'

For you regular readers you should recognize this as one of my moments. We now return to your regularly scheduled programming!

601

This post marks quite a milestone, it's number 601! That's approximately one-hundred per year for the last six years!  I never thought I'd have this much to say or share but I proved myself wrong.

Spring has arrived in Kansas City and that means rain.  We received rain showers several times last week.  More importantly the rain means we will also have beautiful spring mornings.

It was 52 degrees when the guys teed off at disc golf Sunday morning. I was the score keeper once again.  Growing up in St. Louis I was familiar with large, planned urban parks (Forest Park). In Kansas City we have Swope Park. Like Forest Park it contains the Zoo, outdoor theater (Starlight), a golf course and in Kansas City's case, a beautiful disc golf course. Sunday morning, amongst other sightings and sounds we saw Missouri Blue birds and an eight point white-tailed deer. It pains me to be on injured reserve as I rest my hips for the time being, but the sights and sounds of nature, along with the time with friends makes up for my lack of participation.

It was close to 80 Sunday so I cleaned up various winter time debris in the garden, move some hostas and lilies and piddled around in the yard and enjoyed the beautiful weather.

Thursday it's time for another day trip to Atlanta, I can't wait to see how Spring has enveloped Hot-Atlanta!

Provenge Expansion

Last year at this time I had the opportunity, along with 40 other prostate cancer advocates, to tour the Dendreon manufacturing facility in New Jersey. At the time the company was weeks away from FDA approval of Provenge and construction of the expanded facilities were in full swing. As I wrote at the time, it was very, very impressive.

Just last week they were finally granted FDA approval to begin using the expanded capacity, increasing from twelve to forty-eight stations.

[press release]

This is great news for many, many men throughout this country battling against the advanced stages of prostate cancer.

There are two other sites currently under construction, in Georgia and Southern California.  Dendreon is pursuing approval for these two sites and hoping to bring them on line later this year.

A good day and great news for the PCa community!

....And finally.....Happy St. Patrick's Day!!!!!!!! 

McCain Aiming to Eliminate Prostate Cancer Research

I have always tried to avoid the politics of prostate cancer but in this case, it cannot be avoided.

Please go read the most recent copy of “Zero Hour”, the newsletter from zerocamcer.org

This are just a few excerpts:

The Congressionally Directed Medical Research Program is a central component of the war on cancer and has been responsible for helping to move nearly all prostate cancer drug advancements in the last five years.

If Senator John McCain, a war veteran, former POW and 3-time cancer survivor, gets his way, more than $300 million in medical research will be eliminated from the Defense Appropriations bill to help pay for the Iraqi police force.

Though I am a big proponent of smaller government and less spending, this is ridiculous.

Please go read the newsletter and if you agree, please act!

Monday's a pain but Thursday's a grind

I made my third bi-weekly trip to Atlanta this past week. Although I’ve got the thirteen hour round trip down to a science, last night I realized how quickly it has become a real drag.

I’m getting quite a bit of reading done, and I sleep really well on Thursday nights after the trip .However, half way though the three month bi-weekly process, I’m ready for it to be over.  It's very worth every trip if we see a reduction in my PSA and we are able to regain some control of the caner with the Abiraterone.

There is a rumor the same trial will open here in Kansas City, perhaps in April. That would be ideal since I have already booked the flight for the next three trips. I have held off the April 24^th trip because of this and because the airfare on that particular date is $300! The chances of the rate changing are slim, but you never know.

I saw blooming dogwoods while I was on the MARTA Thursday and that means one thing, Spring is here. My favorite time of the year! Ash Wednesday, Lent and soon Easter. Our hyacinth are peeking up and I really cannot wait to get outside and spend time in our yard.

Thursday’s grind will certainly get tougher over the next few weeks as the signs of Spring continue to increase.

Letting it all sink in...

After allowing a few days to let the events of last week sink in, I find myself at peace in so many ways. Although I was very nervous about addressing the J&J team, the speech itself was extremely well received. I was grateful that they appreciated my humor and I was able to keep my emotions under control, for the most part. I can talk about my plight and the disease in casual conversation with ease. For this event I had prepared a dozen Power Point slides and 14 pages of speaker notes. I did this on purpose to keep my myself on point, as I tend to wonder in conversation, especially after being on Lupron for six years. I had a number of points that I really wanted to share and the notes were there to keep me on track.

After I concluded my presentation, I was approached by one particular woman that was so emotional she had written her comments on the back of her business card. We ended up talking and I learned that her father had recently passed from advanced PCA. She described it as him just giving up. The conversation was both touching and crushing.

Many of the attendees followed up with personal emails and comments here on my blog. One email in particular says so much:
Power of the mind, empowering the body with the support of loved ones to fight cancer is so much more powerful than people realize and you brought those ideals to so many people including myself. You changed the way I think and live my life - Thank you David! You are an inspiration now to so many. 
I think I have found a calling. If not a calling, certainly my passion. Promoting my journey,and the fight that so many men are going through, is what I am meant to do. If it helps the life of even just one man, it is all very well worth it!

In so many ways

Saturday night, in the midst of the annual dinner/auction at our church, I received recognizition for supporting  the auction committee and for the accomplishments of FLHW.

This came as a complete and total surprise to me. As our Church Administrator, FLHW Board member and dear friend read those gracious and kind words, I was numb. It was the exact opposite of how I felt last week in Philadelphia. Thank goodness I wasn't asked to speak, this was different. This was a room filled with family and friends, and I would have wept like a toddler. Chris, Rob, Beth and whoever else was involved, thank you from the bottom of my heart.

Later on in the evening a fellow parishioner approached me to both congratulate me and offer a vey generous donation to FLHW. Wow, pile on my weaken emotional state! Once again, I have to say I am amazed by the kindness of people.

------------

Tomorrow is my next bi-weekly trip to Atlanta. I'm still feeling good and though my numbers were up after the first month of Abiraterone, I am confident in the doctor's prediction that it can take several months for the drug to take effect.

What would you do for a year?

Dockers is currently running a contest that will pay the winner for a year to complete a project of their choice

or complete whatever they want.

I was limited to 400 characters, here is my entry:

As a young man of 42, in 2005 I was diagnosed with advanced prostate cancer. There are a limited number of treatments for advanced prostate cancer, and it is considered incurable. Winning would allow me to put everything aside for the next year and pursue my passion: Raising awareness for prostate cancer and raising money needed to find better treatments and a cure for advanced prostate cancer.

I got a very late start and voting ends on March 15^th.

The link to my entry is below, please go there and help me out by voting everyday!

(note; this might require Facebook, I’m not 100% sure?)

http://dockers.contextoptional.com/entries/27741#top

The Big Speech

Today I had the honor and privilege of visiting with over three hundred members of the Johnson and  Johnson pharmaceutical team. For about 30 minutes I shared my personal story and some highlights of the challenges, concerns and opportunities of the many men fighting the battle against advanced prostate cancer.
I was more nervous than the previous times that I have discussed this topic publicly, either on local television or the radio. A large room full of people can be intimidating. 

Below is an excerpt of my introduction to my message about living with advanced prostate cancer.

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

I really appreciate you providing me the time to tell my story and the personal side of what it's like living with advanced prostate cancer.

Though I will spend this time talking about my journey, at the same time I do so as a representative for all the other men out there fighting this disease. These names (referring to a slide projected on 2 large screens at the front of the room) are just 27 of the hundreds of thousands of men out there fighting this battle every day. Some of the men listed are in remission, others are in a similar situation as me, and still others are struggling more than we know. They all have stories, but just like the disease itself, and humans by nature, every one of their situations is unique.

Art G   Bob E   Brian W   Bruce L   Chuck M   Dan J   Dan Z Dom M   Don T   Eric S   Greg J

Jay D   Joel N   John A   John H John S    Kiwi Brian Ludwick   Mark H   Merle   Mike M

Scott G   Terrance   Terry H   Tom T   Tony C   Walt W

I am not a doctor, an academic, nor an expert, but I do believe I know a little more than the average patient. The primary lesson I have learned during this journey is that prostate cancer is a really, really complex disease and every single patient is different. There are men with low PSA and just a few small tumors that are in such excruciating pain that they can barley function. Then there are men like me with high PSA, extensive mets and are in no pain. It’s crazy at best.

Rik M   Rick S   Aubrey P   Steve B   Wes W

And these 5 are friends of mine that are no longer with us. One of these men fought for over 13 years, another less than two. I share these 5 names only to express that once again I am honored to represent those that have succumb and all the men out there dealing with the advanced stage of this disease.

~~~~~~~~~~~~~~~~
I continued by sharing all aspects of my personal journey; the spiritual, the nutrition and physical, the emotional and the medical.  I discussed the blog, our foundation and the fact that people from around the globe have reached out to us, recognizing that prostate cancer has no borders.

I attempted to lighten the subject with a bit of humor.It seemed to be well received.  My hope is that my audience left with a broader perspective of what we, the men with advanced PCa, go through as we battle this horrible disease.