Advanced Prostate Cancer

A brick wall

Advanced Prostate Cancer, chemotherapy, David Emerson, disc golf, PCa -

I was able to get almost all of the way through the week without much day time fatigue, just in the evening and over night.Today on the other hand I am beat. It’s just after noon and I am contemplating heading home for a several hour nap!

I am hoping this does the trick because tomorrow it is supposed to be 60 degrees and disc golf is calling my name! I’ll have to see how things go this afternoon and tonight.
In addition I was hoping to go out a have a nice dinner with Mary tomorrow night, since we spent my birthday at home. I’m not upset with that, I was tired, it was freezing out and my brother-in-law was still getting over a cold. So maybe with the warm weather tomorrow the four of us will find time for a nice meal?
Not much else to share today, other than the fact I pine for spring!

Four Hundred

Advanced Prostate Cancer, David Emerson -

It was early December 2004 when this train wreck began. December 10, 2004 I had my first PSA test, the results was 189. It got worse before it got better peaking at 271 in early February 2005.

It was at that time this blog was ‘born’ and here we are 400 posts later. The original post from February 2, 2005 was titled “The start of the end?“, here is a portion:

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.

Worse case, unsuccessful treatment, or surgery and death. Best case, it’s simply prostatitis (sp?) and the wonderful world of medications will cure all. I’m remaining somewhat hopeful but because of family history and the number of symptoms I have, 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? Braggadocio aside, I am her life. We are very close and literally are each others world. She lost her mom at 8, the same age he is now. Financially she will be fine because of insurance and other investments we have made over the years. 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……

I can still feel the fear in my inner voice as I typed those words. It was a lifetime ago, so much has changed, but one thing remains the same; I still have it and it’s not going away.

The last three years and ten months have brought so much change, mostly positive, happy changes. Not all have been so.

Four hundred posts, I would have never imagined I had enough to share to fill four hundred posts?

The next four years are sure to bring as much change, chaos, ups and downs as the last four. Reading post number one, and comparing it to where I am today, it almost seems like another person wrote those words.
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After last weeks chemo treatment my week was about the same. I experienced a pretty bad case of metallic tongue which kind of ruined Thanksgiving. I was also pretty run down on Wednesday night through Friday morning. Things have returned to ‘normal’ this week as have my taste and appetite!
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On another note Mary and I have a very dear friend in Minneapolis, Mark B. I wrote about him back on October 29th. Mark is currently in the midst on his own chemo treatment for sarcoma and he and his family need all of our prayers. So I ask that you send one their way as they could surely use our help.

What’s up with you? Don’t ask me…..

Advanced Prostate Cancer, Darius Rucker, David Emerson, Des Peres, PSA -

It’s my PSA, up to 39.97 (from 31.18)

What the hell?  
Yesterday’s post was 100% dead on regarding my feeling better than I have in weeks, so where does this come from?
Dr. V tried to put a positive spin on it “… it’s only one data point, PSA can go up and down..” blah, blah, etc.
I appreciate his comments, but as you know, we were looking for it to go in the other direction, looking for the downward trend to continue.
So we just keep on keeping on; I am minutes away from Chemo # 9 (of 12). Two treatments from now, when we come in on January 5th, we will make, or come close to making a decision about what will be the next treatment after we have completed this regimen.  The likely choice will be DES. DES is an oral pill taken once daily. It is basically women’s estrogen.
Before beginning DES I will have to have one treatment of radiation across my breast bone. This is to help alleviate one of the potential side effects, breast enlargement.
Yeah, that’s right, it just keeps getting better and better!
Before making this decision, we obviously have a little research to do. There are a few other clinical trials we might consider, including Provenge. 
It’s all so crazy, unpredictable; I feel great, my bone scan was stable but……
A MUSIC UPDATE: I haven’t included any musical suggestions in quite some time.
Last night I downloaded Darius Rucker’s new album. If you don’t recognize the name, he is/was the front man for “Hootie and the Blowfish”. Well it seems Darius went a little country! I just listened to it in the lobby, it’s really good. His strong voice come through loud clear all without too much ‘twang’! It’s a keeper, I give it two thumbs up!

Looking forward to …..

Advanced Prostate Cancer, chemotherapy, David Emerson, PCa, University of Kansas Cancer Center -

number 9.

Tomorrow, about twelve hours from now, I will be in the midst of chemotherapy treatment number nine.  I’m feeling a bit indifferent tonight; I feel great and in fact, overall I feel better than I have in sometime. Not that I have been feeling bad, it’s just I feel really good right now.

Taking advantage of weather in the 50’s today we played disc golf this morning (welcome back Pete, I really missed you).  Upon my return home I took advantage of the nice temperatures and my high energy level and proceeded to put up our outside Christmas lights. It only took me a few hours and I am glad that this chore is behind me. Next weekend we can focus on the inside decorations. That is, depending on the side effects from “old #9”!

I find it hard to believe that tomorrow I will be 3/4 of the way through this process. I want better results, a lower PSA number, and more, but I am a realist at the same time, and things are going extremely well.  I shouldn’t be greedy but I should thank God for what has happened so far in this process.

I probably say this to often but I live this terribly ironic life; I try my best to go on day after day with my head up, trying to remain positive, trying to laugh and live. All the while I carry this unbelievable burden called cancer. Not a cancer that can come, and begone in short order, but a cancer that goes on and on, unknown to most. There is nothing in my outward appearance that would even let anyone know what a cruel war is waging inside of me.

I am and will remain the commander, the General of this war – I will not be defeated without a fight. Fortunately, even after four years, the battle has just gotten underway.

Life

Advanced Prostate Cancer, chemotherapy, David Emerson, disc golf, PCa -

I saw this quote and because it’s so appropriate, I thought I’d pass it along.

Life is not the way it’s supposed to be.

It’s the way that it is.
The way you cope with it,
is what makes the difference.
Played disc golf this morning, 28 degrees when I left the house, but it was 45 degrees when we finished at 10:30.

Monday is treatment #9, more thoughts on that over the weekend!

Another successful year for FLHW

Advanced Prostate Cancer, David Emerson, FLHW, PCa, PCF -

As many of you know, one of the first things I did after being diagnosed with advanced pc was to establish a non-profit foundation, the Faith – Love – Hope – Win Foundation. The simple mission of this foundation is to raise awareness of the importance of testing and early detection and to raise money to fund the research required to develop improved treatments and ultimately, a cure. In just three and a half years we have donated over $100,000 to the Prostate Cancer Foundation. Here is a recent message that we sent to some of our supporters:

On behalf of the Board of the Faith – Love – Hope – Win Foundation, we would like to personally thank you for your participation and support of the 2008 FLHW golf tournament.

This year’s event was a great success; a success that would not have been realized without your generosity. We were blessed with a beautiful day, a full field of golfers, and an exceptional group of volunteers.

The result of this year’s event is a $32,000 donation to the Prostate Cancer Foundation (PCF). This donation will be doubled through a matching program at PCF. Furthermore, these funds will be dedicated to support research for improved treatments and a cure for advanced prostate cancer.

It is through your participation, coupled with the support of all of our sponsors, participants, and volunteers that we have, in just four short years, cumulatively donated over $100,000 to PCF for advanced prostate cancer research.
­
The research that our donation supports is what gives us hope that a cure will be discovered in our lifetime. Thank you for sharing in our hope.

Mark your calendar now for the 2009 FLHW Tournament which is scheduled for Friday, September 25th at Ironhorse Golf Course. We look forward to seeing you there!

I extend this message of thanks to all who have supported our mission through the years!
2008 was our most successful year so far:

The Quitter

Advanced Prostate Cancer, cowboy poet, David Emerson, PCa, Robert Service -

I ran across the following poem by a ‘cowboy poet’, Robert Service.

It was part of a notice posted to one on the on-line boards I monitor regarding the death of another one of my brethren. I did not know the man, nor did I recognize his name but after reading this, his favorite poem, we were linked by more than PCa.

Read it in it’s entirety, it is reflective of me, my thoughts, my battle and how I fight this fight.
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The Quitter

When you’re lost in the Wild, and you’re scared as a child,
And Death looks you bang in the eye,
And you’re sore as a boil, it’s according to Hoyle
To cock your revolver and…..die.
But the Code of a Man says: “Fight all you can,”
And self-dissolution is barred.
In hunger and woe, oh, it’s easy to blow…
It’s the hell-served-for-breakfast that’s hard.

“You’re sick of the game!” Well, now, that’s a shame.
You’re young and you’re brave and you’re bright.
“You’ve had a raw deal!” I know – but don’t squeal,
Buck up, do your damnedest, and fight.
It’s the plugging away that will win you the day,!
So don’t be a piker, old pard!
Just draw on your grit; it’s so easy to quit:
It’s keeping-your-chin-up that’s hard.

It’s easy to cry that you’re beaten – and die;
It’s easy to crawfish and crawl;
But to fight and to fight when hope’s out of sight-
Why, that’s the best game of them all!
and though you come out of each gruelling bout,
All broken and beaten and scarred,
Just have one more try – it’s dead easy to die,
It’s the keeping-on-living that’s hard.

Gloom without doom

Advanced Prostate Cancer, David Emerson, Down Under, test results, wbc -

OK, so you lovers of Fall, now what?

The leaves have all fallen and the gloominess of Fall/Winter has arrived in Kansas City
like a Mac truck! It was in the seventies last week, and now it’s been rainy for two days and
the temperatures are hovering around 40! Bah humbug!!
It looks like this weekend disc golf will make it’s annual return to the course in the woods, or “Down Under’ as it is called. Ignoring the comments of my first paragraph, I love it! I’ll snap a few photo’s and include in an upcoming post.
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Mary just called with the results of yesterday’s blood test and bone scan.
Bone scan results – good news, no changes from the end of August!!
Blood Test – stay away from me! White and red blood cell counts now at an all time low!!!

Outraged!!

Advanced Prostate Cancer, David Emerson, PCa, Social Security -

OK folks, I need your help.
Below is an article that announces a recent change by the Social Security Department inwhich they will accelerate the disability payments for certain diseases. While many types of cancer are included, advanced Prostate Cancer is missing.

As you can imagine, I find this outragous!

If you can find the time, please click here and write to your Senators:
US Senate

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The Social Security Administration Expedites Some Claims for Disability Benefits

Social Security Announces Nationwide Launch of Compassionate Allowances Process Will Fast Track Applications For People with Cancers and Rare Diseases

Michael J. Astrue, Commissioner of Social Security, today announced the national rollout of the agency’s Compassionate Allowances initiative, a way to expedite the processing of disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s standards.

“Getting benefits quickly to people with the most severe medical conditions is both the right and the compassionate thing to do,” Commissioner Astrue said. “This initiative will allow us to make decisions on these cases in a matter of days, rather than months or years.”

Currently, getting social security benefits can be a long time process which often does not get “worked out” until after the death of an applicant. Hopefully this process will expedite the process so that people will be able to receive their benefits to which they are entitled when they actually need them.

The expedited decision process is starting out with a total of 50 conditions. The Social Security Administration has stated that, over time, more diseases and conditions will be added to the list of expedited illnesses. A list of the first 50 impairments — 25 rare diseases and 25 cancers — can be found at at the end of this post.

Compassionate Allowances is the second piece of the agency’s two-track, fast-track system for certain disability claims. When combined with the agency’s Quick Disability Determination process, and once fully implemented, this two-track system could result in six to nine percent of disability claims, the cases for as much as a quarter million people, being decided in an average of six to eight days.

“This is an outstanding achievement for the rights of the very sickest in our community. The high number of backlogged cases and appeals has made it a significantly time consuming task to obtain the benefits we are entitled to receive. Hopefully his program will break the log jam and people will be able get on with their lives.

“Unfortunately, many hardworking people with cancer may not only face intensive treatment to save their lives, but they may also find themselves truly unable to perform their daily work-related activities and as result, may face serious financial concerns, such as the loss of income and the cost of treatment,” said Daniel E. Smith, president of the American Cancer Society Cancer Action Network. “The Social Security Administration’s Compassionate Allowances program will help streamline the disability benefits application process so that benefits are quickly provided to those who need them most.”

The list currently includes:
Acute Leukemia
Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
Alexander Disease (ALX) – Neonatal and Infantile
Amyotrophic Lateral Sclerosis (ALS)
Anaplastic Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
Astrocytoma – Grade III and IV
Bladder Cancer – with distant metastases or inoperable or unresectable
Bone Cancer – with distant metastases or inoperable or unresectable
Breast Cancer – with distant metastases or inoperable or unresectable
Canavan Disease (CD)
Cerebro Oculo Facio Skeletal (COFS) Syndrome
Chronic Myelogenous Leukemia (CML) – Blast Phase
Creutzfeldt-Jakob Disease (CJD) – Adult
Ependymoblastoma (Child Brain Tumor)
Esophageal Cancer
Farber’s Disease (FD) – Infantile
Friedreichs Ataxia (FRDA)
Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult
Gallbladder Cancer
Gaucher Disease (GD) – Type 2
Glioblastoma Multiforme (Brain Tumor)
Head and Neck Cancers – with distant metastasis or inoperable or uresectable
Infantile Neuroaxonal Dystrophy (INAD)
Inflammatory Breast Cancer (IBC)
Kidney Cancer – inoperable or unresectable
Krabbe Disease (KD) – Infantile
Large Intestine Cancer – with distant metastasis or inoperable, unresectable or recurrent
Lesch-Nyhan Syndrome (LNS)
Liver Cancer
Mantle Cell Lymphoma (MCL)
Metachromatic Leukodystrophy (MLD) – Late Infantile
Niemann-Pick Disease (NPD) – Type A
Non-Small Cell Lung Cancer – with metastases to or beyond the hilar nodes or inoperable, unresectable or recurrent
Ornithine Transcarbamylase (OTC) Deficiency
Osteogenesis Imperfecta (OI) – Type II
Ovarian Cancer – with distant metastases or inoperable or unresectable
Pancreatic Cancer
Peritoneal Mesothelioma
Pleural Mesothelioma
Pompe Disease – Infantile
Rett (RTT) Syndrome
Salivary Tumors
Sandhoff Disease
Small Cell Cancer (of the Large Intestine, Ovary, Prostate, or Uterus)
Small Cell Lung Cancer
Small Intestine Cancer – with distant metastases or inoperable, unresectable or recurrent
Spinal Muscular Atrophy (SMA) – Types 0 And 1
Stomach Cancer – with distant metastases or inoperable, unresectable or recurrent
Thyroid Cancer
Ureter Cancer – with distant metastases or inoperable, unresectable or recurrent