David’s Blog

Lucky #7, again

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Last Friday, February 11th marked the six year anniversary of my diagnosis. A few of us gathered at a local watering hole for a few beers and some lively conversation. I wasn’t up for anything big, and this was a big step from years past when I may have blogged about it or discussed the significance of the day with Mary.
I can’t imagine a day when we have a big party celebrating remission, a cure, etc.  But I can imagine a ten year celebration. After all, I’m now practically a week into year seven!
There is so much going on right now. Work is keeping me busy. It’s that time of year when I put together the catalog for our annual church auction/fundraiser. I also am preparing for a speech the first week of March. I will share more about this event with you at a later date. I also have been asked to submit a short letter for inclusion in one of the PC advocacy group’s annual report. We have an FLHW Board meeting this week and I also have a committee meeting for a different project at church. So I guess that answers the question that might have guided you to log in to my blog, ‘I wonder how David is doing?”!
My presentation is all but complete, I just need to practice.  The draft of the letter is currently being reviewed and tweaked by editorial staff (Mary). Keeping busy benefits me in many ways, but the main one is to keep my mind off of the disease. I don’t dwell on it often or for very long, and I appreciate the many distractions that I have throughout my day to avoid it from becoming a constant obsession.
So in conclusion, as I begin year seven, I once again feel blessed and remain optimistic about the future.

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.”

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!”

Dealing with the grind

Abiraterone, Advanced Prostate Cancer, David Emerson, PSA -

A friend asked the other day if Mary and I talk about what’s going on a lot. I explained that at home we are very open with Brad and that her and I talk as appointments near and as decisions need to be made, but we don’t talk about ‘what if’ much anymore.

As you can probably imagine that topic usually leads to tears. I think the last time I had a real good cry about this might have been three or four years ago. I’m not afraid to have the discussion and as a matter of fact a good cry is very cleansing. We just choose to focus our energy on beating the disease and don’t dwell on ‘what if’.

It’s not that we live in denial.  We have just learned to live in the now and we always try to remain positive. Thinking about death, and the end, and what happens when we run out of options is just not in our repertoire. There are far too many options that still lie ahead of us. None of them offer a cure, but they each offer time. Add them all up and who really know how long this can go on?

I’d be leaving something out if I didn’t say that it all weighs heavily on my mind. As I mentioned in my last entry, we have a new normal. I don’t care for it much at times, but for the most part, life goes on in some ‘normal’ way.

This is a big week in this journey. It reminds me somewhat of the days and weeks that led up to chemotherapy back in 2008. I am a bit nervous, certainly anxious, and will be very happy when this week reaches a conclusion.

Extra prayers to Brian and Kim in New Zealand tonight. Brian is in a similar stage as me and had to be taken to the hospital by ambulance. His pain had reached a point that he couldn’t drive himself.
This prayer is dedicated to Brian:

Prayer to Saint Peregrine ~ Patron Saint to cancer patients
O great St. Peregrine,
you have been called “The Mighty,”
“The Wonder-Worker,”
because of the numerous miracles
which you have obtained from God
for those who have had recourse to you.

For so many years
you bore in your own flesh
this cancerous disease
that destroys the very fiber of our being,
and who had recourse
to the source of all grace
when the power of man could do no more.

You were favored with the vision of Jesus
coming down from His Cross
to heal your affliction.

Ask of God and Our Lady,
the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession,
we shall sing to God,
now and for all eternity,
a song of gratitude
for His great goodness and mercy.
Amen.

My blessings are always counted

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Oh, what a lucky man he was is.
That’s a line from an old 1970’s rock group, Emerson, Lake and Palmer.
It just reminds me of how lucky and blessed I am.

As next week nears and we take the next major step in this journey I find myself unbelievably thankful.
My life is surrounded by a compassionate family, wonderful friends, and the support of my boss, insurance
company and more. (the latter might seem strange to include but as opposed to some horror stories,
my insurance experience has been very smooth).

The past six years have flown by. That might be hard to imagine, but it’s true. At the same time, life has changed so much that I forgot what it was like before, when things were”normal”. Normal left us so long ago, but that’s not a bad thing. We have settled into this medical circus and it has become our normal. Believe it or not, I’m OK with this.

Finally, please send your positive thoughts and prayers to all my PCa brethren out there….

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

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