PSA

An absence

Advanced Prostate Cancer, David Emerson, FLHW, PSA -
It’s been a few days since my last post. Sorry, but I’ve been extremely busy! In addition, there is not a lot to report from a health perspective. I continue to feel fine and in fact, perhaps even a little better overall.

Earlier this week Brad had his Confirmation. It was a touching, spiritual Mass and it was good to have family there as well. We had a nice celebration over the weekend. I cannot express enough how proud I am to be his father. How he has handled my condition for the past six years as well as how he has managed other situations make me proud beyond words. He has developed emotional strength and maturity well beyond his years.  He and I will be spending a lot of time together in the next several weeks, and for that I am both thankful and blessed.

Last Friday we held the 3rd annual ‘Friday Night in the Greenhouse’ event. It was beautiful evening and we were delighted to see a number of old friends and many returning supporters of FLHW. It is a nice family event and we raised $1,800 for prostate cancer research and promoted the importance for men to be tested for prostate cancer!

Tomorrow is the 4th annual FLHW Prostate Cancer Doubles Shootout, a two man disc golf tournament. This year will be the biggest, with more players and more prizes than ever before! Once again the weather forecasts for it to be a little cool, but dry.  It was that way last year and turned out to be quite perfect. Looking forward to spending the day outdoors with friends and family. I’ll post plenty of photos and perhaps some video in the days ahead.

Have a great week-end!

Light the Whitehouse Blue

Advanced Prostate Cancer, David Emerson, Light the Whitehouse Blue, PSA -

A few weeks ago I added a link on the right side of my blog, you may have noticed the ‘Light the Whitehouse Blue” link.

This is a a wonderful effort and attempt to get the President to ‘Light the Whitehouse Blue’ during September as it is during other months for other cancers. The link to sign the petition is at: http://lightthewhitehouseblue.org/

If you have a minute click on the link to help support this effort, seriously it will take less than a minute!

When down is up…

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -
Since January, when I started my current treatment, I have had my PSA checked by two labs, four days apart. The first test is done in Atlanta as part of the clinical trial while the second is done in Kansas City as part of my regular monthly Oncologist appointment.  The difference in the test results are expected, one of the first things we learned after being diagnosed was to always use the same lab. Though we have changed labs a few times (due to changing doctors) we have always focused on the trend and not individual test scores. 
In my last post I reported that though my test in Atlanta showed a slowing of the trend, my PSA was up again. Today I am here to report that my number from the lab in Kansas City is actually DOWN 17% to 336! Can I get a ‘HELL YES’!
Here are the raw numbers since January and a pretty chart of my PSA over the last few years.
KC
ATL
01/31/11
349
200
01/25/11
02/28/11
356
250
02/24/11
03/28/11
403
293
03/24/11
04/25/11
336
323
04/21/11

A small victory but still good news! I’ll be real happy when trend line is going down. I had a statistics teacher who use to say ‘Two data points make a trendline’, now I just have to wait 672 hours for the results of my next PSA test!

Up, however

Abiraterone, Advanced Prostate Cancer, Atlanta, David Emerson, PSA -

I received a call from Atlanta Friday morning with my PSA results from Thursday. Below are the four results I received from my trips to the doctor in Atlanta. For the record, January 27th was the day I started the trial.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Date          PSA        Rate of Increase

27-Jan      200
24-Feb     250          20%
24-Mar    293          15%
21-Apr    328           11%
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At first blush, yes my number is up again, but the good news is the rate of increase continues to drop.
Additionally, when I talked with Dr. A Thursday he indicated that he has had several patients that he took off the trial after two to three months. Unlike my case, these men continued to see a rapid rise in PSA and, more importantly, a progression in bone pain. Although my number is up, the rate is slowing and the number of and severity of the aches and pains I experience are down from the previous visit.

Today I am seeing my local Oncologist. The bad news is that KUCC is not yet able to accept patients for the trial. I am less hopeful that they will be ready by May 20th, the date of my next check-up. I have made a few inquiries through some connections and should have a better idea by tomorrow.

In the past few days I received two separate emails with sad news. We lost two more men to this dreaded disease. One in his late 60’s the other in his late 70’s. Some what older than me, but still hard on both families.
In one case the man’s daughter said that though her dad was not much for computers, he always asked ‘how’s the young guy with the blog doing?’ From time to time she would update him on my progress and she indicated in her message he found it inspiring. That makes me feel good, I just wish the entire circumstance was different.

How many more have to lose their battle before we make a break though?

How many? A lot when you count them all.

Abiraterone, Advanced Prostate Cancer, David Emerson, hrpca, Kenny Chesney, PSA, Zac Brown Band -
As much as I try there are times in this journey, like right now, that I cannot help but spend a lot of time wondering and worrying. Overall I remain positive, but it’s only natural that I ‘suppose’ in my thoughts. The good news is starting May 1st my life is going to get rather busy (busier than it currently is, if that is possible!) and that will provide less free time for my mind to wander.
I have another speech early in the month, two events for the foundation, one on the 6th and the other on the 14th, Brad has confirmation, graduation and then we are taking a trip to Florida.  June will include Mary having a medical procedure of her own followed by substantial recovery. In July I will be going to Chicago to see U2 with a few friends, followed by my 30th High School Reunion in St. Louis.  At the end of the month we are going to the Kenny Chesney concert with one of my favorites, the Zac Brown Band. For the latter event I will finally be meeting a fellow PCa survivor and dear friend Tony. After all of this, Brad will be starting high school in August and well, life will go on. I’m tired just reading this list!
In this midst of all this hustle and bustle, I really need my trial medication to kick in. My PSA needs to stabilize at a minimum and actually decrease significantly. If not, what lies ahead is some combination of Provenge, chemo, and perhaps other clinical trial drugs. Some MAY be more promising than others, but it is the current medication we are counting on for results.
I’m going to do my best to focus on the list above, yard work and various home repair projects we are in the midst of currently. There are times when I am real good at it, there are others like now when I struggle. In the end, things could be far worse for me, so I stop, say a prayer and count the many blessings in my life.
Tomorrow is what I really hope is my last trip to Atlanta. We are very happy with the medical staff in Atlanta, it is just that the logistics are time consuming, expensive and ultimately exhausting. My case will be transferred to my regular Oncologist locally at the KU Cancer Center. Additionally, per the trial protocal, my visits will become monthly instead of bi-monthly. Your prayers for a lower PSA, or at a minimum a stable PSA would be greatly appreciated.

I’m tired

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -
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!

In so many ways

Advanced Prostate Cancer, David Emerson, FLHW, PSA -

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.

The Big Speech

Abiraterone, Advanced Prostate Cancer, David Emerson, FLHW, metastatic, PSA -
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.

Hurt

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA, the Big C -

To someone who needs it:

When I see you like this,
I hurt so deep down inside.
It only gets worse,
when I consider that,
there is nothing I can do.

I can only hang out on the fringe,
witnessing your pain,
handcuffed to the reality
that is life.

This world is cruel,
and so are her inhabitants,
Gods creatures,
believers and hypocrits
all wrapped up in one being.

Like a finely tuned Swiss watch

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -

4:30am wake up
5:01am showered, dressed and and out the door
5:43am arrive at KCI, terminal A
6:35am flight departs on time
9:22am arrive ATL Hartsfield
9:59am with large vanilla latte, board Marta red line
10:28am arrive at Arts Center Station
10:36am unlock the Zip Car
10:54am arrive at Oncologist’s office (only 9 minutes late)
11:35am finish appt with medical staff and depart
11:41am finally get to have breakfast, coffee
12:22pm return Zip Car
12:26pm board Marta to airport
12:57pm arrive at Hartsfield
1:25pm Pass through TSA, no pat down required
3:45pm Return flight to KCI, on-time and with another open middle seat
6:02pm Back home, dinner with the family!

I can only hope that future trips go so well!