David’s Blog

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.

The rebound

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

Since the last post a lot of things have happened, all of them good.

First of all, I’m feeling much better mentally and physically.
The occasional left hip/femur pain has been gone for days. I’ve been able to avoid Advil for weeks
and mentally I’m back on my game.

I spent six hours yesterday painting and redecorating one of our guest bedrooms. Today we got up and walked four miles in the 23rd annual ‘Trolley Run’. This year it benefited a wonderful organization that my 3 year old nephew utilizes, CCVI (Children’s Center for the Visually Impaired). There must have been 12,000 runners and walkers. It was amazing and felt really good to walk on such a beautiful morning!

After words I came home, spent about an hour in the yard and then put the finishing touches on the guest room.Tonight Brad and I attended a Confirmation meeting at church and now the family is relaxing watching a little television.

So the secret? Just stay incredibly busy! Mary asks me to slow down all the time, but I can’t. I won’t if this is the end result.

Worries come creaping back

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

It never ceases to amaze me how fast the days are flying by! Is it really the middle of April already? Wow.

Before I get to me, there are a few guys out there I have been thinking about a lot today and add to my worries. I pray for a long list of fellow PCa survivors regularly, but there are two that are on my mind today.

Dan Z celebrated his one year anniversary. My guess is, like the rest of us, it’s rather subdued. I hope he does nothing more than spend the time with his family. After all, does anything else really matter?

There is another young man, and when I say young, Gabe is only in his mid-thirties. Today he found out his PSA jumped considerably. He was first diagnosed last summer and was hoping to manage his case for as long as possible. Now it appears he might have to make a treatment decision sooner versus later.

Then there is me. Lately I find myself waiting, worrying, wondering if the clinical trial drug is ever going to work? If not, then what? Worry, it’s beating me down, but I’m not out.

A short post I know, but this is where I’m at.

Flight 922

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -
Tomorrow is what I am hoping will be, my second to last trip to Atlanta. As I’ve written here before, I have the trip down like clockwork, however it’s getting old. To get right to my point, I really hope KU Cancer Center gets their approval for the trial in the next few weeks. If they do get approved, I can stop making these trips and the timing will make the transition smooth and easy.
Spring is in full bloom in Atlanta and I hope I can find a few minutes to enjoy it tomorrow. 
The challenge will be to dedicate the free time to two work conference calls right after my doctor appointment, so the down time will be quite limited on this trip. Ultimately, it will make the waiting time pass quickly.
The last two weeks went by so fast, they are a blur. Nothing eventful happened and almost the entire time was pain free. My streak of three weeks without Advil ended yesterday. I think between yard work on Saturday, the amount of walking over the weekend and the fact I worked out Monday morning,  I might have over done things just a bit. On the proverbial doctor’s scale of pain (1-10, 10 being the worst), this is a 2.5 tops. The good news is it only bothers me when I walk and it’s just something I live with from time to time.
With the arrival of Spring I have a lot of plans for our yard and gardens. I’m just praying the body cooperates! I’ll just have to pace myself, something I struggle with all the time.

The numbers can drive you crazy

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -
The PSA (Prostate Specific Antigen), the primary marker used to diagnose, track and manage a patient with prostate cancer is at best a confusing indicator. There are men dealing with advanced PCa that have low PSA and high levels of pain. There are men like me that have high PSA and little to no pain. Then there are cases everywhere and in between.
Another idiosyncrasy regarding the PSA test is the differences in labs. Since I started this journey I have always been advised to stick to one lab, due to the variances in the processing between labs.  My current state is a perfect example. In January I began traveling to Atlanta as part of a clinical trial for a promising drug called Abiraterone. To date I have had three PSA tests in Atlanta and each time I have had a PSA five days later as part of my routine, monthly Oncologist visit in Kansas City.  The differences in the tests are reflected in the table below:
Date:     KC                         Atlanta:
1/27      349                         200
2/24      356                         250
3/24      403                         293
As you can see, not only does the overall number vary greatly, the percentage of change is completely different. As a patient this can drive you crazy, believe me! Mary is particularly frustrated with the lack of explanation and frankly, concern with respect to the variance in test results between the locations. However, we have repeatedly questioned it and been reassured by both doctors that it is standard practice to have a variance, sometimes even significant variance between labs. At this point in time, we don’t have much choice but to accept it. Looking only at Atlanta the encouraging aspect is the trend line is slowing. January to February my PSA increased by 25% month over month. February to March my PSA increased 17%.  Looking at my KC PSA scores the January to February, the increase was only 2%. February to March my PSA went up 13%.
What does all this mean? Where does it lead? No where really. Since entering the clinical trial back in January we agreed that aside from a crazy increase (perhaps doubling) in either my PSA or excessive symptoms (pain), we would give it six months as recommended by Dr. A. With the trend slowing and pain mostly non-existent we stay the course for at least another month and God willing much, much longer. Patience is a virtue.  We are just anxious to see the PSA decrease to signal to us that we are finally successfully managing the cancer.

Serenity

Abiraterone, Advanced Prostate Cancer, David Emerson, Faith-Love-Hope-WIn, PCa -

It’s not quite 7am, March 24th, 2011
I am writing this while in the air between KC and Atlanta as I make my fifth trip to see the Oncologist running the prostate cancer clinical trial in which I am participating.

I currently find my mind wandering to a place I’ve been successful in avoiding since I was diagnosed six years ago. The place I refer to is of course ‘worry’. I worry when and if this current treatment will begin working. Time will tell and by late Friday or Monday morning I’ll have the answer I both seek and fear.

This rant is the part I suspect is the hardest for people to understand. Perhaps I’m to blame for not spending enough time on it here. To me worry is whining. That is likely not a very good attitude to take, but I question if there is another better attitude to fight this fight with? My emotions are all over the place as you can probably tell.

I have options beyond this current medication but they are not the greatest. Two involve a return to chemo. One of the chemo options, though recently approved for use in cases like mine, is once again not a cure. There are several drugs in an earlier trial stage then my current treatment, but those become a matter of logistics since none are available in Kansas City.

Beyond the selfish worries my thoughts turn to my family, instigating additional worries. My son, being fourteen, is at a critical stage in his life. He’s about to start high school and with that his world, challenges, experiences and such are set to grow exponentially. I want to be there as he matures through his high school years. Then there is Mary. Twenty-four years ago she came into my life. She is everything to me, my best friend, my confidant my heart and my soul.

We’ve known for six years that our dreams of a lifetime together, of spending our retirement years together were in serious jeopardy. There are times like these when it really doesn’t matter that we may have discussed the changes to our grand plan, worry, pain, and mental anguish are at the forefront of my mind today. I’m hesitant to even type the words ‘I want it all to go away’ simply because those words ring of denial. It is what it is. I have stage IV prostate cancer, I’m struggling through a temporary funk, but I’ll come out on the other side alive, mentally stronger and a better person for having gone through this experience.

A very good friend, Dr. S. and I discussed the power of the ‘Serenity Prayer’ once, the discussion is quite clear to me, like it was yesterday. As I write this from 33,000 feet I had to pull the prayer card that Mary had gotten me from my wallet and recite it three times. It gives me comfort right now and I would like to share it with you…

God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.
Living one day at a time,
enjoying one moment at at time,
accepting hardship as a pathway to peace.
Taking, as He did,
this sinful world as it is,
not as I would have it,
trusting that He will make things right
if I surrender to His will.
That I may be reasonably happy in this life,
and supremely happy with Him,
forever in the next.

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!

601

Advanced Prostate Cancer, David Emerson, disc golf, spring -

This post marks quite a milestone, it’s number 601! That’s approximately one-hundred per year for the last six years!  I never thought I’d have this much to say or share but I proved myself wrong.

Spring has arrived in Kansas City and that means rain.  We received rain showers several times last week.  More importantly the rain means we will also have beautiful spring mornings.

It was 52 degrees when the guys teed off at disc golf Sunday morning. I was the score keeper once again.  Growing up in St. Louis I was familiar with large, planned urban parks (Forest Park). In Kansas City we have Swope Park. Like Forest Park it contains the Zoo, outdoor theater (Starlight), a golf course and in Kansas City’s case, a beautiful disc golf course. Sunday morning, amongst other sightings and sounds we saw Missouri Blue birds and an eight point white-tailed deer. It pains me to be on injured reserve as I rest my hips for the time being, but the sights and sounds of nature, along with the time with friends makes up for my lack of participation.

It was close to 80 Sunday so I cleaned up various winter time debris in the garden, move some hostas and lilies and piddled around in the yard and enjoyed the beautiful weather.

Thursday it’s time for another day trip to Atlanta, I can’t wait to see how Spring has enveloped Hot-Atlanta!

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