Advanced Prostate Cancer

Letting it all sink in…

Abiraterone, Advanced Prostate Cancer, David Emerson, FLHW -

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

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.

What would you do for a year?

Advanced Prostate Cancer, David Emerson, Dockers, Wear the Pants -
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 15th.
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?)

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.

Trailblazing….

Abiraterone, Advanced Prostate Cancer, Atlanta, David Emerson, David Emerson pca, FLHW -
It was just a brief comment during a phone call. The friend, and fellow PCa patient, said something to the effect of  “You are out there trailblazing for me and the rest of us!”
Trailblazing? Wow, I never looked at it that way. Perhaps I was living in a momentary bout of selfishness? I was looking at my current clinical trial from a me, me, me point of view. Yes, it is true I really need this treatment to work, but just as important, we, all of us fighting this disease, need it to work. 

This past week I have been dealing with a bit of back pain. It is manageable, but I do plan to discuss with Dr. A in Atlanta on Thursday and with Dr.V next Monday. It’s on my right side and feels like it is in the middle of one of my ribs. After doing some research on line this afternoon, I learned that back pain is one of the listed side effects for the clinical trial drub, so I am hopeful that is the source of the pain, versus a bone met.   Tylenol and Advil have been taking care of it and I have spent the last few nights sleeping on the heating pad, which has helped as well.


Tomorrow I will complete my second one-day round trip to Atlanta. When I printed my boarding pass for the departing flight this morning, the forecast said 61 and sunny in Atlanta. I just print the boarding pass for my return flight and the forecast says 41 and snow flurries in KC when I return! If my flight is oversold, I might just have to get off and stay the night. (Just kidding Mary!)

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!

My Abby Road

Abiraterone, Advanced Prostate Cancer, David Emerson, Kreskin, Provenge -

I was looking for this post a few weeks ago, when it became apparent that Abby (Abiraterone) would become my next treatemnet.

I’m not suggesting that I’m Kreskin or Nostradamus, but it is crazy how close I was with some of the things in this post from two and half years ago. Provenge, I was nearly right on the money, it was 19 months later.

October 17, 2008

The fruits of medical research are growing. Here we are in February 2011 and there are a number of promising treatments on the horizon. Most are still in trial stage, but things are a lot different than the picture this old post paints. More options means hope and that is a good thing.

On another note, the dead of winter has set in with a vengeance and I really look forward to Spring.

When you put it that way…..wow!

Advanced Prostate Cancer, David Emerson, PSA -

On the prostate cancer message boards we often discuss the cost of treating prostate cancer. Last week I provided a summary on the 2010 costs for my treatment. Below you will find the summary, these are 100% prostate cancer related as I am otherwise healthy :-).

During the year I had two bone scans, a CT scan, a MRI, 14 radiation treatments, 13 Zometa and Lupron treatments. I was on DES (not included in this cost) I have been on Lovenox since mid-October.
Billed Amount $117,005.53
Paid by Plan $46,156.01
Patient Responsibility $1,684.97

Billed Amount = amount medical provider billed insurer
Paid by Plan = amount insurer paid medical provider

For a general idea of what this has cost so far, take these numbers and multiply times six.

All I can do is say a little prayer for the fact I have great health insurance!

It’s Blog-aversary VI

Advanced Prostate Cancer, David Emerson, hrpca, PSA, the Big C -
February 2, 2005
Entry #1 – The start of the end?
(This is just a portion of my first entry)
So here I am, a 42 year old, white male and tomorrow I am having a biopsy to determine if the problems I am experiencing are ultimately diagnosed as Prostate Cancer. Grim thought indeed.
…. I am fighting to remain positive. I pray a lot more than I ever have.
I worry most about my wife and young son and how they would go on?…. But I worry about them both emotionally and psychologically. I can’t imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have……
February 2, 2011
Entry #589 – It’s Blog-aversary VI
Now I find myself here, an outlier, way down the right side of the bell curve. Wondering, worrying, still trying to find fresh perspectives to share with you.
I try to keep the focus on what I am feeling and thinking versus what I am doing. For example; when I share that I had/have treatment I think readers appreciate it more when I share that it worries me, that I am hurting and what I’m thinking about. Anyone can post the mechanics of living with this or any disease, but I have always tried to reach deeper, beyond the scans, tests and needles. I really try to provide something unique that other survivors can use. Maybe they learn something and gain just a little insight in order to deal with what may lie ahead for them.
As I mentioned to a fellow PCa survivor earlier today, “It’s a badge that most of us would relinquish if we had the option. We don’t have that choice so some of us share it hoping to provide just a little light in an otherwise dark cancerous world.”