Abiraterone

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!

Monday’s a pain but Thursday’s a grind

Abiraterone, Advanced Prostate Cancer, Ash Wednesday, Atlanta, David Emerson, spring -
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 24th 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…

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!

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.

Worried? Not enough to stop the getaway

Abiraterone, Advanced Prostate Cancer, David Emerson, LA Lakers, LAX, Tommy's Burgers -

When will I stop worrying? The answer is likely, never.

It is true, I have started the next step in the journey, but the way that this whole process evolves in my mind is a little tricky. As I go through this post I hope I don’t leave you with the impression I am not grateful or that in any way I am not thankful for the opportunity that this new drug provides.

The next, and first measurement will be a PSA blood test in four weeks. In between I will have my potassium level and other markers measured but the key marker will be the stabilization of my PSA, and eventually the lowering of the PSA. As long as this continues every four weeks I will remain on Abiraterone indefinitely.

You may be saying, great that will make you so happy. Well on one hand yes it will, but on the other I will return to living my life in 28 day cycles. I would give practically anything to have 6 weeks, two months or more without having to worry about this disease. As I mentioned in my last, it’s an emotional grind and yes, I should be cherishing this opportunity but not yet. I pray that it comes in time.

I was able to put it aside from time to time this past weekend. After spending Thursday night back in Kansas City I left for Los Angeles on Friday to help a friend with some business. There was a convention in LA that I agreed to help him with last minute.

We arrived on Friday around 2:00 pm and were pleased to see a convertible Mustang waiting at Avis. Though it was the color a blue Smurph would have envied, we didn’t express any complaints.  Our first appointment was about an hour south of LA so with the top down and the temperature a perfect 72, we hit 405 south.

It was around 4pm when we got back on the highway to LA and we began discussing how much we’d be willing to pay for Lakers tickets that night.We got a real bargain on StubHub, better yet, he had a connection that got us into the club level for the game.  The Lakers ended up losing but it was a fun time and a good experience.

We spent Satruday at the trade show, hit Tommy’s Burgers (I passed on the burger), drove up and down Rodeo Dr. and watched ‘Due Date’ before calling it a night. Sunday we grabbed some breakfast, returned the car and returned to LAX. [side note: back and forth to Atlanta and LA in one week, no one at the TSA came close to patting me down and the security personnel were all pleasant.] We spent about an hour in the terminal brain storming ideas for business and then back to the cold midwest with new stories forecasting a blizzard in the coming week. for Kansas City. It was a nice distraction and freat way to end a very stressful and hectic week. J, I owe you big time!

Today I had my monthly Oncologist visit and I received the standard shot and infusion. My PSA spiked but it was a different lab than last week and I’m now five days into the treatment. It’s too early to tell if anything had changed so I’m going to mentally discard today’s reading. It’s the test on the February 24th that will hopefully  start to indicate how things are going.  Dr. A in Atlanta did attempt to set our expectations by explaining that a patient does not typically see a positive response for a month or two.  We will do our best to have patience.

Birthday presents

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

On Tuesday Mary and I traveled to Atlanta. The purpose of this trip was to meet with a new doctor and be approved for a clinical trial that offers a drug that should help quell the beast. With the continued increase in my PSA, it was critical that we find a new treatment. The drug, Abiraterone, is on the verge of FDA approval.

Tuesday was unbelievably stressful and tiring. We had to get up at 4:45am in order to get ready and catch a 7am flight. The trip to Atlanta was non-eventful but when we landed it was raining. The rain continued all day and the gloominess hung over me like the large gray clouds that blocked the view of the Atlanta skyline. After getting a rental car and driving to the Buckhead area, we only had time for a quick lunch before heading over to the doctor’s office.

Somehow our luck continues when it comes to finding pleasant, professional and accommodating medical support. Dr. A’s staff was fantastic. We spent 30 minutes or so with the doctor followed by a trip to the hospital for tests. Dr. A has been involved with this specific drug throughout all stages of the clinical trial. He has seen excellent results from the majority of the men on the trial and very few complications. The primary side effects noted are low potassium and leg cramps. In order to monitor my health through this trial, I will be returning for blood tests and visits with the doctor every two weeks for the first 3 months and then once a month after that.
The remainder of Tuesday afternoon was spent at the hospital where I had both and an EKG and an echocardiogram. I wasn’t familiar with the latter, but learned it is basically a sonogram of your heart. I was able to view the monitor and I must say it was pretty exciting to watch my heart valves open and close! At one point I could see all four chambers at once, quite amazing.

By the time we checked into the hotel and got to our room it was nearly 5pm. We took a few minutes to drop our things and headed off to dinner. Wouldn’t you know it, we found one of our favorites, Houston’s right down the road. We had a nice meal but the craziness of all the travel and the stress of waiting another 36 hours had caught up to me, I was exhausted.

We spent Wednesday working from the hotel, working out and swimming and then had dinner at a restaurant I had discovered a few years ago when I had to travel to Orlando on business, Seasons 52. They have a great grilled scallop dish that we both enjoyed and we were back in our room by 8:00pm.

Neither of us slept particularly well on Tuesday and Wednesday it was worse. Tossing and turning continued and we threw in the towel and got up a little after 6am. We arrived at the doctor at 9:30 and they were once again the epitome of efficiency. By 10am I had the trial drug in hand and was taking my first dose. A quick stop at their pharmacy for the Prednisone and we were on our way back to the airport.

I really despise airlines when they charge you to change flight. It cost $50 each for us to walk up to a kiosk, scan our boarding passes and use the on screen menu to change from the 4:10 to the 12:50 flight. $100 and not a single second of human intervention! Complaints aside, it was well worth it to get home three hours earlier on my birthday.

Perhaps I failed to mention that previously…yesterday I turned 48. As I look at those words on the screen in front of me I am taken back for a number of reasons. First, my how life flies by, 48! I also look at the header of this blog and think about all that has happened in the last 6 years. The highs, the lows, the ups, and the downs. The new friends I’ve made and cherish, the friends I made and lost, and those this disease has allowed me to reconnect with after so long. What a life I have led in such a short time.

Ahead lies more than a 49th, 50th and more. Birthdays are the milestones but everything that happens the other 364 days are a blessing. Take some time to slow down and enjoy them because once they are gone, you can’t get them back.

At the end of the day I pray that this new drug is successful in taming my disease for months and perhaps years to come. I would like nothing more than to look forward to 12 years from now and be able to post, “Yesterday was my 60th birthday and Mary and I stayed at home, had a nice quiet dinner and shared a cupcake with one candle on it!”