hrpca

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.

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.”

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!”

The first question and nearly every question that follows…

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

When first diagnosed with cancer we try to come to grips with ‘Now what’? “Now what” with my life, my treatments, my family, my career and so on. The trepidation of now what does not end with the initial diagnosis, it goes on and on. With every up and down, every good test result and every bad, your mind immediately returns to the constant questioning. Now what?

I know some of you may be saying that this is no different than life in general, it’s just human nature to question the future, to wonder what lies ahead. While I have no argument to counter, I do believe that it is much different for those of us with cancer.

My journey, though a tad short of six years, is a constant journey of questioning. Every four weeks I visit my doctor to be retested. The results of these tests never lead to peace in my mind or in my heart. If the numbers are good, I question ‘For how long?’. When the numbers are bad, like they were last Monday, I wonder ‘Now what?’. The very limited number of options I have continues to be a challenge and weighs heavy on my mind. There are three or four things I can do next, but none of them really provide substantial relief for my heart or mind.

I am not writing this from a place of depression, I’m actually in a great place mentally. I’m just trying to make a point so that when you see me, or talk to me and I say ‘Oh I’m doing fine’, it’s a little more complicated than that…actually it’s much more complicated. I try my best to remain hopeful. I just wish for a little while that I could get a reprieve from the ‘Now what”!

The silence is deafening….

howard hansen, hrpca -

Earlier last week the Prostate Cancer Community lost another wonderful man, Howard Hansen.

Here is a brief synopsis of Howard and his work from the website he managed (http://www.hrpca.org):

Hansen has battled prostate cancer since 1993 and he co-founded Hormone Refractory Prostate 
Cancer Association (http://www.hrpca.org/), an independent nonprofit, more than 10 years ago. The association operates through the HRPCA.org Web site and through an email-based support group. Hansen and other volunteers provide information that helps patients manage their disease thereby maintaining their quality of life. The group of cancer patients also shares the latest medical literature on the newest treatment opportunities and strategies to aid them in discussions with their oncologists.

I never met Howard or even spoke with him on the phone but we exchanged a few emails and I read every post he sent to the Prostate Cancer support message boards. He was a wonderful resource and will really be missed by both us seasoned veterans and those that are newly diagnosed.

God bless you Howard, Joan and your entire family.

It’s a good news, bad news thing…..

Advanced Prostate Cancer, David Emerson, hrpca, Provenge, PSA, radiation -
I’ve written here are a few times about a recently approved and very exciting new treatment for advanced prostate cancer, a drug known as Provenge. Well it seems the demand is far exceeding the company’s capacity to keep up. This is something I saw first hand back in March and something that the company has been very clear about since the FDA approval in late April.

From Bloomberg: Rationing of Provenge

It’s just kind of sad to see in writing and know that even after Dendreon expands their existing facility and opens two others by the middle of next year, it will take some time to clear the back log of patients.

By the way, the title had nothing to do with my personal situation. Yesterday I received my 14th and final radiation treatment. For the most part the whole process was easy. I had some increased pain the first week and was rather fatigued as well. I have however been completely off pain meds for a week now and the fatigue is in the past as well.

We met briefly with the radiation oncologist and I can begin to exercise again but to avoid any exercise involving my legs for the next few weeks. Walking will be fine, but I have to avoid sit-ups so there goes the six pack abs I was working on! Disc golf of course is still a non-issue for at least two months, that is a hard pill to swallow, but I am very thankful that the pain is gone.

Turn the page

Advanced Prostate Cancer, David Emerson, hrpca, MRI, PSA, radiation -

During last month’s Greenhouse fundraiser I met a great couple, the Clarks. She invited me to attend a support group they are members of and asked me to share my journey. I gladly accepted though I did so with some trepidation. Most times I can tell the story and speak of the treatments and issues we’ve experienced with ease. Other times it becomes too emotional.

Tonight was their monthly meeting and Mary and I fought our way through a massive thunderstorm to arrive about 10 minutes late. The meeting began with the members of the group sharing their names and their stories. I was by far the man with the most advanced diagnosis and based on some of their expressions and reactions, I think they were somewhat stunned by our journey.

On a daily basis I guess in some ways I forget everything we’ve been through. When I lay it out like I did this evening, and tell ‘our story’ it is sort of overwhelming. I am glad to report I completed the tale without getting emotional. There were a few points when I had to pause and take a deep breath.

I share all this as a prelude to the latest chapter in the journey. What I am about to share is certainly a new part of the journey.

First the blood test and MRI: my PSA was down almost 18% from the previous week! And the MRI expressed some stable area but others there showed noticeable increase in activity. The Radiologist was careful with his assessment, they always are, but this time he was comparing the MRI to a CAT scan from last October, eight months ago. The one area that was rather clear is my right thigh has a tumor that has nearly tripled in size. I wish there was more to report but that will come tomorrow when we meet with the Radiology Oncologist. It is all but guaranteed that My next step in dealing with the pain will be radiation treatments. The question remains how many? Will we go after the hips and the leg? How successful can we be without compromising my bone marrow in case I need future chemotherapy?

Only time will tell, fortunately, time in this case, is less than 12 hours.

Wrong turn

Advanced Prostate Cancer, David Emerson pca, hrpca -

Mary and I started the weekend off by spending the night on the Country Club Plaza. We had a great dinner and a few adult beverages as we enjoyed a much needed evening away.

Our elation was shorted lived however. Saturday afternoon and into the evening my right hip started to hurt. It was the same pain, with the same severity that I have been experiencing off and on for a few months. By Sunday morning it had become rather severe. Medical professionals use a 1-10 scale to ask patients to describe pain. Though I have a rather high tolerance to pain, the upper end of the scale was an area I had yet to visit.

While Advil has always proven to be the miracle cure for my pain, this time it failed me. 800mg didn’t even put a dent in the level of pain. We called my oncologist and waited for the return call. The oncologist on call was very nice and suggested we try alternating Extra Strength Tylenol with Advil, option 2 was the ER.

I’m not going to go into all of the details of the past two days, I’ll just say that it was at times impossible to get comfortable and there was a four hour period when I virtually could not move. Although Tylenol helped me to sleep Sunday night, that was about it. By Monday morning we were at KU Medical Center picking up a prescription for a pain killer. The pain has subsided enough that I again was able to sleep. We are now headed down to the KU Cancer Center to get blood tests, an x-ray and then visit with doctor at 3:00.

The doctor in me believes this has to be more than arthritis and related to the tumor in my hip.

This is all I know for now, details to follow tonight or tomorrow.

This is big, this is REALLY big!

Advanced Prostate Cancer, David Emerson, hrpca, PCa, Provenge -

Today the Federal Drug Administration approved Provenge for use in certain men with advanced prostate cancer. Here is the press release: http://bit.ly/bgfhul

This is the first new treatment for advanced prostate cancer to be approved in something like 15 years.

With an estimated 192,280 new cases of prostate cancer each year, and with approximately 27,360 men expected to die from the disease in 2009, this is significant. Just to be clear, this is NOT a cure. Provenge is a new treatment that has shown a survival benefit of four months

over the current treatment, Taxotere. Additionally, it is given over three treatments spanning a month and the side effects are significantly less than those associated with chemo (Taxotere).

There are a lot more details to be released from Dendreon such as availability, cost and where it will be available. Dendreon has provided more information at: http://www.provenge.com

My ability to use it in the future is uncertain. I’m not sure I will qualify and I’m not sure how much and/or where I can even get it for some time. The important thing is that it is now another viable option in my very narrow inventory of future treatment options.

All in all, a good day, no a great day for the cause!

No Foolin’

Advanced Prostate Cancer, David Emerson, hrpca, PCa -

I received this from a fellow PCa survivor. So instead of April Fools hysterics, I thought I’d include it here.

In particular, this goes out to Brian.

To all my brothers out there trying to win the battles!

Be the kind of man that when your feet hit the floor each morning, the devil says “Oh crap, he’s up!”
Brother, life is too short to wake up with regrets, so love the people who treat you right.
Love the ones who don’t, just because you can.
Believe everything happens for a reason.
If you get a second chance, grab it with both hands.
If it changes your life, let it.
Kiss slowly.
Forgive quickly.
God never said life would be easy, he just promised it would be worth it.

Today is Brother’s Day. Send this to all your brothers, fathers, sons.

If you get back 7, you are loved.
Happy Brothers Day!
I LOVE YA BROTHER!!!

To all of the cool men that have touched my life. Here’s to you!!

A real brother walks with you when the rest of the world walks on.