A Capital affair

On Tuesday the 20th, I left for my visit to Boston at 4:30am. Though this was my first check-up after starting the latest clinical trial, it was just a check-up and only standard blood tests were run. I won't  get a view of my scans until I return on October 11th. The Boston leg of the trip and the visit with the doctor were non-eventful.  When I finished I was then off to Washington, DC for 'The Summit to End Prostate Cancer". I attended the same event last year, but was more excited to return in 2011.
Aside from the opportunity to meet and speak with our elected officials (Kansas Senator Pat Roberts),

I was also anxious to finally get to meet in person a few on-line friends that I have know for years.
First was Tony from Las Vegas. We were diagnosed around the same time. He initially contacted me via email, but over the years we have talked on the phone, instant message and of course Facebook. He's a great guy and a wonderful champion for our cause. I hope the people in Las Vegas realize what a resource they have in him!

Finally I visited with Sherry G. from New Mexico. She lost her son to prostate cancer when he was only 36. Sherry, much like Tony, is an outspoken advocate for all men. Not just those fighting the disease but also those men that should be and need to be screened.

Though tiring, it was a wonderful three days in Washington, DC. To Congressman Yoder and Sentors Roberts and Moran - please do your part and continue to fund cancer, and more specifically prostate cancer research.

Prostate Conditions Education Council Hosts 22nd Annual Awareness Week

Sorry, I'm a little late in posting this message. There is still time for a free screening at several locations throughout the US, the details are below.

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Prostate Conditions Education Council Hosts 22nd Annual Awareness Week, September 18-24;

As the most common cancer and second leading cause of cancer death among American men, it's important to be aware of the resources currently available to detect prostate cancer.  While experts continue to explore the benefits of prostate cancer screenings, the Prostate-Specific Antigen (PSA) test and Digital Rectal Exam (DRE) remain the safest routes to detecting the disease in its earliest stages – when it's most treatable.    This year the Prostate Conditions Education Council (PCEC) – a national organization committed to men's health and a leader in prostate cancer screening – continues its 22-year tradition of coordinating free or low-cost screenings to encourage men to protect their health as part of its national Prostate Cancer Awareness Week (PCAW).  This year's PCAW takes place between September 18-24 with screenings available at hundreds of sites across the country.  Men can find the sites by visiting http://www.prostateconditions.org/screening-site-finder or calling 866-4PROST8.

"In many men, prostate cancer is an aggressive disease that is most successfully treated when it is detected early on," said Dr. E. David Crawford, Head of the Urologic Oncology Department at the University of Colorado Health Sciences Center, and Founder/Chairman of the PCEC.  "As the research community explores various methods to detecting the disease, I continue to encourage men to play an active role in their health by looking to those trusted sources of prostate cancer testing – the PSA and DRE."      During PCAW, men are offered a baseline PSA blood test and a DRE administered by a trained professional.  Many screening locations also offer testing for cholesterol and testosterone, as many factors play into overall men's health awareness and a man's risk for prostate cancer. 

PCEC recommends that after 35 years of age, all men should work with their doctors to determine a screening schedule that is right for them.   Not only does PCEC encourage yearly screenings after the age of 35, but also overall health awareness to lessen the risk of prostate cancer.  Every year PCAW brings additional attention to the prevention and treatment of prostate cancer by dedicating "Six Days of Prostate Cancer" to key points for men to keep in mind as they pay attention to their health.  PCAW screening sites are also equipped with a variety of free informational materials that will help guide men in improving their overall health condition.  "PCEC is extremely proud of our commitment to improving men's health," said Wendy Poage, president of PCEC.  "Since the first PCAW in 1989, the program has helped to screen nearly 5 million men in the United States, and this number continues to grow both at home and internationally."  

PCAW's overwhelming success in the United States has not only helped to safeguard the lives of American men, but has also influenced prostate cancer detection initiatives abroad.  In fact, this year will mark the first prostate cancer screening event in Japan where free or low-cost screenings will be made available to more than 100 men at the Showa University Hospital in Tokyo, Japan.  "Japan is a country where prostate cancer incidents are on the rise, and screening rates are low.  It's critical that we recognize the importance of early detection and the role that screening can play," said Dr. Takashi Fukagai, coordinator of the prostate cancer screening at Japan's Showa University Hospital. About Prostate Cancer Awareness WeekThe Prostate Conditions Education Council organizes hundreds of free or low-cost screening sites annually for more than 125,000 men across the United States and internationally. 

To date, the program has resulted in nearly 5 million screenings.  To find a PCAW screening site near you and for more information on prostate cancer, please visit http://www.prostateconditions.org/screening-site-finder or call toll free 866-4PROST8.  You can also join in the conversation by searching for the Prostate Conditions Education Council on Facebook or 4prost8health on Twitter.   About Prostate Conditions Education CouncilA national organization committed to men's health, the Prostate Conditions Education Council (PCEC) is the nation's leading resource for information on prostate health.  The PCEC is dedicated to saving lives through awareness and the education of men, the women in their lives, as well as the medical community about prostate cancer prevalence, the importance of early detection, and available treatment options, as well as other men's health issues.  The Council – comprised of a consortium of leading physicians, health educators, scientists and prostate cancer advocates – aims to conduct nation wide screenings for men and perform research that will aid in the detection and treatment of prostate conditions.  More information is available at http://www.prostateconditions.org/. 

Focus, from another continent

In my mind I have been contemplating several variations of this post for a few weeks. I received a note from a friend and in it this person referred to me as a hero. At first I wanted to grab a keyboard and proclaim "I am no hero". For whatever reason, I just want to share, and hopefully benefit others with the my life experience. I don't think I can carry the weight of that label. This clearly was not their intention, but those four letters stuck with me.

Life got the best of me this week and between work, doctors appointments and family activites I was not able to take the time to sit down and address this topic. Good thing because today I received a wonderful note that put it all in focus. DG, a young man from Uruguay sent me the note below. I have included it here with his permission.


Dear David, I followed your site and fb for a couple of years because my dad have pc.
2 days ago he lost his fight, six wonderful years fighting shoulder with shoulder with a exceptional father.

I write this mail to say how much helped us yours histories, your knowledge and your courage.
Maybe i dont wrote you before because my english (with the years is making worst and worst) but I still keeping reading your post every day, sharing your happiness and sadness, and this was keeping me pushing and pushing until the end.
 
I had the lucky and pride of keep my dad in my arms during her last travel with mom,my brother,my wife and my little daughter (Her princess ) in our home.
Now is time to rest for dad and for us.
Please keep fighting, i will keep reading

I cried, seriously. Perhaps it's the rainy morning. Maybe it is recent news about PCa brethren facing tougher times ahead. Maybe it was the wonderful, complete day I had with Mary and Brad yesterday. What ever it was, his words touched me in a way I definitely needed at this time.

I also sit here and wonder why, two days after he lost his father, DG would write to me. Why? Maybe becasue this blog is more far-reaching and meaningful than I sometimes give it credit for. I am honored to use this medium to reach out to those touched by cancer. I'm just a guy with Prostate Cancer that, at the beginning of my journey, decided to share my battle with cancer publicly. If doing so reaches nearly all four corners of the world and I can bring just a little bit of peace to one man, one family, then we all are blessed.

DG, you and your family will continue to be in my thoughts and prayers.
I dedicate the following prayer to your Father:

Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen. 

UPDATED: The ugly truth

The pictures below are a comparison of my first and most recent bone scans. The picture on the left was taken in Boston last month. The one on the right was my original bone scan from February of 2005.

Both cause me to take a deep breath and acknowledge just how serious my situation is.

I’m not going to speak to 2005, it was a long time ago and it is water under the bridge.

However, last month’s scan, as I wrote here before,  was and is a bit difficult for me to look at.

The areas of most concern to me are: the base of my skull, right shoulder (the scan is from the back), left lower femur, upper ribs (both sides) and spine. It doesn’t leave much NOT to be concerned about! You can probably imagine why, after seeing this last month, I decided to stop playing disc golf for a while. In closing, I would like to add – ‘Come on medication!!’

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I love the double entendre, today’s post is a triple! Here is the second part.

After receiving my two shots yesterday, we asked the nurse to check on my PSA test.

It was ready for once and as she handed the printed page over she commented, ‘wow, it really went down a lot!’ She hands me the print out and it shows my PSA at 71.4!  Mary started to get really excited, but I cautioned that there must be something wrong. XL-184 doesn’t impact PSA to this degree, and surely not so quickly. I had taken 14 doses so far. We stopped by the Oncologist's office before leaving where they confirmed, the the machine in the lab errored and the decimal point was in the wrong place (Oops!!!!!!!!!!!)  The real number (unfortuantely) is listed below.

So here is today’s third ‘ugly truth’, my PSA for the past 18 months. On one hand, because our focus is on the current trial (XL-184), we are not investing much energy in dwelling on the numbers. Our hope lies in the new med and that is where we are focused. The trial uses the scans to measure the success of the treatment and the first updated scans will not be done until October 11^th. On the other hand, the PSA trend is very concerning. Below is snapshot of the PSA trend and treatment changes for the last 18 months.

The Oncologist office called this morning. Apparently the lab was REALLY screwed up Monday. They re-ran my PSA three times. It turns out it was 595, not 714. Quite a difference and quite a relief!

The true warriors

While I was quietly having a little self-celebration for making it four days without Advil or pain meds, I received updates on a few friends whose Prostate Cancer battles have taken new turns.  For the first time in several weeks I was able to get through four straight days without taking Advil and sleeping without Oxycodone. Last night the streak ended when the pain returned in the back of my rib cage, where it continues today. I am leery to even mention my aches and pains after the news I received on my friends Eric and Terrance.

I met Eric at a Prostate Cancer conference in Los Angeles back in 2006. A now retired firefighter and motorcycle enthusiast, Eric recently began having severe back pain that landed him in the hospital. It initially appeared to be related to PCa and though he still needs to meet with a few other specialists, the source of the pain appears to be from an old accident and not the cancer. Skipping the details, his T4 vertebrae is collapsing and pressing on his spinal column. I can imagine all the scenarios that must have gone through his mind in the last few days, attributing everything to the cancer. Though now that it appears that it is not PCa related, that does nothing to relieve his pain. Eric, God’s speed brother, I’m praying for you.

The second person is Terrance. Though just two years into this journey, this disease is wreaking havoc on his body. Though he somehow found the strength to go salmon fishing the last several weeks, he now faces surgery to relieve the pain that is apparently being caused by swollen lymph nodes and an enlarged prostate. If that wasn’t enough, this will be followed by chemotherapy to fight off the advancement of the prostate cancer. Terrance – I pray for a speedy recovery and that you are back casting lines before winter!

I share these stories and ask that you spend a minute praying for or sending positive energy their way. My little bouts with Advil, mild pain meds, etc. are nothing compared to what these guys are going through right now. These are the true warriors.

The starting gun

On Tuesday I was up at 4:15am and out the door by 4:40am in order to get to Boston, MA for my 1:00pm appointment.

There is nothing eventful to report about the travel, a connection in Atlanta, on time arrival,  45 minutes on the bus/subway and I promptly walked into the doctor’s office.

Due to the nature of the clinical trial, the vampires required 9 vials of blood and a urine sample. The results of the blood test are required before the trial drug can be released. The lab was able to turn the blood test around in an hour. During that time, I met with the Nurse Practitioner and reviewed the blood test, CT and bone scan from August 2^nd. There were no surprises in the blood work and CT scan; PSA was 440 (expected) and CT showed swollen lymph nodes in my lower abdomen (also known).

The bone scan on the other hand was, for the lack of a better term, frightening. I have seen and studied my bone scans since I had my first scan in February of 2005. This scan showed extensive areas of new tumors where there have never been tumors before. I was not surprised, with my PSA level being as high as it is for so long, what I saw was somewhat expected. That being said, seeing the image on the screen. actually looking at the cancerous tumors in black and white and acknowleging the fact that you are looking at yourself, it was rather shocking and a bit difficult to quickly accept.

The highlights, or low lights in this case, are as follows:

• -       Extensive areas in upper to lower mid spine (much more than before)
• -       Left lower femur shows a rather large new spot
• -       Right shoulder and collar bone show new areas of growth
• -       Upper right ribs show quite a bit of new growth
• -       Several small areas on the vertebrae between shoulders and base of skull.

       These were the most concerning to me.

I ask you to let that sink in for a minute and perhaps re-read it.

 

The good news is that several minutes after reviewing the scan, the clinical trial nurse brought in my first 21 pills for the clinical trial drug, Cabozatinib or XL-184. The trial I am enrolled in is the third Phase II trial of the drug. The purpose of this phase of the trial is to gauge the effectiveness  responsiveness) of dosages. My dosage is 25mg. Aside from changes in the physical aches and pains I won’t know if the drug is working until new scans are taken on October 11^th.

After leaving the hospital I walked around the neighborhood (Beacon Hill) briefly before heading back to the airport. I wish I had more time and will try to make a point to check out more of the neighborhood on future visits. My friend Jason was in town at the same time but was leaving a bit earlier than me. We had discussed trying to meet my for dinner but he called to say he was running late and was barely going to make his flight. An hour later, after going through security and eating something I was walking around the terminal killing time.  Suddenly I felt a hand on my shoulder was quite shocked to turn around and see him standing there smiling! What a great way to finish a long and stressful trip! Jason - thank you for being there and being such a wonderful friend. We were brought into each other’s lives through fate and a hat, destiny can be a beautiful thing! When you look at the photo of Jason and myself, it’s hard to believe all of this is going on inside me. The irony of my life!

It’s Prostate Cancer Awareness month so please support the cause. You can do so in a number of ways; write your elected official and ask them to continue funding the much needed research, change your porch light to blue, Support any number of PC group, Encourage a loved one, friend or acquaintance to get tested. Most importantly, pray for all the men that are currently fighting and suffering from this dreadful disease!

Another lap begins

I apologize upfront but prepare yourself for a cliché ridden post.

For some people diagnosed with cancer, their journey can be more of a sprint. They have treatment(s) and then try to figure out how to live between check-ups and the 5 year ‘all clear’ milestone. This is true of many cancers survivors, not just those diagnosed with prostate cancer. There is no judgment in my observation, I’m just pointing this out as a way to contrast the experience to my journey.

My journey is a marathon and a mega-marathon at that! Imagine you run, and run and run until you are almost completely exhausted physically and mentally. Then, all of the sudden you round a corner and there is the finish line. As you cross however, it is merely to begin another lap and not to break the tape and throw up your arms in joy. For me, and the other survivors in similar situations, when we cross the line, we know there is no celebration. For us, we have to suck it up, dig down deep and begin another lap around the course, the course that is our treatments.

So tomorrow, when I get off the subway in Boston and cross the street (the finish line) and enter the hospital to begin my next lap, I will suck it up once again. I will dig down in the depths of my soul to find the strength, the courage and the hope needed to get me through this next lap on the journey. The terrain will be tough, there may be storms, the headwinds will stall my progress and the tailwinds will help me along. I will complete the lap.

There is a question I constantly ponder. The question is once again going to remain unanswered for the near term and it may only be revealed in the months ahead – ‘The next time I cross the finish line, will I be celebrating or will I once again dig deep and trudge on and on for yet another lap?’

Come On Irene!!

Not the 80's classic by Dexy's Midnight Runners, but the Hurricane!

I thought before whining about myself, I should add that I pray for all the people, businesses, animals, etc. that lie in her path.

Though it looks like she'll pass through Boston on Sunday, I hope the havoc is minimal and by Tuesday morning, all flights are on time and travel to and fro goes off without a hitch.

Regarding pain management, Advil is down to two every twelve to twenty-four hours. I also have only had to take pain pills to sleep twice in the last four days. Tuesday can't get here soon enough!

My Compass

There are those people you meet in your life, you know the ones, teachers, friends, professors, etc., those people that have a profound impact on your life. I married mine.

She, without meaning to do so, changed me in so many ways. She also supports, encourages and helps me through the cyclone that has become my life.

When we met I was a wandering soul. I was working, had finished two years of college but had no long term direction or short term goals. Since then, I earned my undergraduate and graduate degrees, have a relatively successful career, was blessed with a wonderful son, a comfortable home and a non-profit foundation provides me with an immense sense of pride. The cancer battle aside, we are genuinely happy and content.

Now, more than ever, she needs me for that same support. I am with you Mary, I love you more than ever and I am here to help you get through your challenging times, as you have always been there for me. I am blessed that you came into my life over 24 years ago and am honored that you married me on that wonderful Saturday in August, twenty years ago.

Here's to many, many more years ahead for us to share.

Musical Associations

This morning I thought I'd play a game I call musical associations. It's going to do two things, expose my musical tastes and preferences (nothing new here) and allow me to free associate a part of a song with something that is or has gone on in my life.

First, I launch Pandora, the on-line music service. Today's station is 'K-SHE 95'. I created this years ago and for those of you not from St. Louis it was THE preeminent rock and roll station of the 60's, 70's and 80's. I moved away from St. Louis in 1990, so I'm not sure what happened to the format.

Up first: Ten Years After - 'I'd Love to Change the World'

This is from their 1971 album A Space in Time

The line that immediately stood out is this one, 'I'd love to change the world, but I don't know what to do, so I leave it up to you.'

Though a song written forty years ago, to me this is so indicative of the present. People find it easy to complain about this or that, but very few will stand up or take the time to make a difference. Perhaps they just don't know how to get started '..but I don't know what to do...'. Instead of sacrificing their time, energy, talents, resources '...they leave it up to you...'. Remember, I'm just observing here, not judging.

Next up: Led Zeppelin - 'Nobody's Fault but Mine'

A cover song from the late 1920's, also played occasionally by The Grateful Dead.

"I got a monkey on my back"

It's an old blues song that LZ added a heavy rock and roll influence to, as well as changed up the lyrics. Now I could have gotten the line "I got a monkey on my back" from a number of songs but remember how this works; hear the song, make the association. If I have to explain my personal monkey, someone hasn't been paying attention. I'd really like the monkey to just go away for awhile so I could live a normal life, or something that resembled a normal life. With ten days to go, I am feeling more anxious and more obsessed with the disease. August 30th can't get here soon enough. I know removing the monkey completely is not likely to happen, but perhaps I can get him off my back and he can walk beside me, though behind me would be better! 

Finally on came The Outlaws - 'Green Grass and High Tides'

This was the tenth and final track from their 1975 debut album.  

For me this song takes me back to high school. My brother Doug and I must have listened to this song a thousand times or more. For those of you not familiar with the song, it is a nine minute, forty-nine second southern rock classic. The wiki link above has a great write up on the song, but in a nutshell, it is a tribute to Jimi Hendrix, Janis Joplin and others. These lines from the song have always stuck with me: 

Those who don't believe me

Find your souls and set them free

Those who do, believe and know

That time will be your key

Time and time again
I've thanked them
They helped me find myself
For a peace of mind
Amongst the music and the rhyme
That enchants you there 

This morning music was my escape. I hope as you read this you consider three things in your life:

1) Do something for others, for strangers. Make a difference in someones life, people need to be nicer.

2) Get the monkey off your back. In my case it's cancer, yours could be a multitude of things, major or minor. Maybe it's just a phone call to a friend or family member that you should have made months or years ago. Don't wait, life is far too short.

3) Find an escape, spend time on yourself. Get away from the television, cell phones and computers; listen to music, read a book, take a walk, refresh your mind.

I now step down from my soap box .....  Sunshine came softly though my window today....