THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2018 SO THERE IS NO UPDATE.

Hello, my name is Craig.

I am currently 58 years old. I work as a computer programmer and have been married for 40 years. I also am bipolar and have been on medication for 12 years. I suffer at times from severe depression.

Since my early forties, I have had regular checkups for my prostate due to prostatitis and also because their is a history of prostate cancer in my family. My father was diagnosed with prostate cancer in his fifties. It was treated with Brachytherapy and external beam radiation. It affected his bowels but he did live to be 85.

In November of 2010, my urologist detected a lump on my prostate. My PSA was still low (1.2) at the time. He recommended a biopsy which was done a week later. The results of the biopsy was a Gleason score of 7 and he recommended it be removed by Robotic Laparoscopic Prostatectomy. I got a second opinion who also recommended it be removed.

In January 2, 2011, I had the surgery and it was determined by the biopsy afterward that I was actually a Gleason 9 and it had spread to the seminal vesicles. I was sent home the next day with a with a urinary and Foley catheter. I almost immediately started to leak around the urinary catheter. I then began to experience extreme pain which caused me to go the emergency room where it was determined I had a bowel blockage. On January 8th, I was operated on for the blockage. I also experienced a torn bladder. I was not a happy camper. I had a catheter in for three months and when it was removed I experienced complete incontinence and impotence.

The incontinence has never gone away completely. I need to wear a pad daily. The impotence was resolved with a penile implant but the incontinence has had a major impact on my sex life.

After the surgery I was given Lupron and Casodex. At the time, my bipolar was not being treated well and I was very depressed. The Lupron made it worse and after two treatments, my urologist took me off the Lupron but continued the Casodex. At the time, my PSA was .05. I continued on the Casodex until November of 2012. My PSA began to rise, it was 1.5. My urologist said it could be the Casodex causing the reading to be off and took me off of it. In January of 2013, a PSA was done and it was 45.6. I was brought back in 5 days later for a second PSA and it was 48.3.

A bone and CT scan was done and it revealed my prostate cancer had metaticized to my bones. It was all up my spine, ribs, sternum, shoulder, elbow, hip, and skull. Not good. I counted some 18 places on the bone scan.

I was referred to an oncologist. I was again placed on Lupron and Casodex. This time I tolerated it due to having my bipolar under control. It lowered the PSA to 1.2. It remained there until October when it rose to 2.6. In November, it rose to 8.6. The cancer was castrate resistant. I had hoped for the Lupron to keep it in check for longer that 10 months.

Another set of scans were done and the results were mixed. My oncologist said my original tumors had shrunk somewhat but I had three new spots. I asked him if he thought it was good or bad and he said bad.

Because I do not experience any outward symptoms at this time, I was told I was a 'prime' candidate for Provenge. I've read up on it a good bit and it seems to work for some men. What bothers me about it is there is no good way to determine if it is working. Nevertheless, I will be starting it on December 20, 2013. I'll keep you informed on how it goes.

Well a month has gone by with a few changes.

First, I have completed two Provenge infusions with little to no side effects. Mainly it has been feeling tired and weak but that could be due to other issues. I did develop a pain between my shoulder blades that began as a burning sensation to feeling like I had been hit hard in the back. When I told my doctor about it, he immediately sent me for a MRI. It turns out I have a vertebra between my shoulders that the cancer has compromised to a large degree. Thankfully, the MRI showed no compression of the vertebra or impact to the spinal cord.

My PSA went up from 8.6 to 13.65 in December. I was not surprised. I actually was expecting a higher number because it has been doubling since September. I have read other men's stories here that detail to a larger degree their PSA.

I love it when I hit the wrong key. SMILE.

Anyway I was about to say that due to what I have read on other men's blogs, I have requested my records so I can give a more detailed history of my cancer.

What I thought I would talk about today was how my depression affected my treatment. In November 2010, I was diagnosed with prostate cancer. It was found by a DRE. A biopsy came back with a Gleason score of 7. At the time, I had been depressed for a very long time and was being treated (unsuccessfully) for being bi-polar. Due to being depressed, when the urologist recommended a radical prostatectomy, I did not investigate what other options were available to me. I did get a second opinion but here in Orlando, the Florida Hospital system has been buying up doctor's practices so the person I saw was in the same system. I think I should had found someone outside the system. Also I did not do much research so I did not know what other options were available and my doctor did not elaborate on other options. That was my first mistake.

My second was not finding the best doctor to do the surgery. My urologist had done hundreds and had a good reputation but my surgery was a disaster. First he did not spare the nerves, second, he caused a bowel obstruction resulting in an additional surgery and 15 days in the hospital. Third, my bladder was torn resulting in stents being put in and have a catheter for an extended amount of time. When I finally had it removed, I had total incontinence. I have never completely recovered it.

With all this, my depression worsened, it was already bad. My PSA after surgery remained around 2.5 and I was put on Lupron and Casodex to bring it down. The Lupron caused me to become suicidal. I tried two months in a row to overdose myself. The second time, my urologist took me off Lupron. At the time, my PSA was .05. I was hospitalized for my depression and over the course of several months with a different psychiatrist, my depression was brought under control.

Having the correct medication for my bi-polar has made a hugh difference in how I am now facing the metaticised bone cancer. I am not gripped with fear, instead I find myself grateful for each day. The cancer has made me aware of how much I have taken for granted. This may seem strange but I am happy, not happy I have the cancer, but I have a positive attitude.

I have read enough blogs here to know that this cancer eventually is going to get me, but in the meantime, I am enjoying life. For me, half the battle has been not letting the cancer destroy my ability to enjoy the life I have left. So if anyone reads this and is experiencing depression, seek help, it's out there.

Well a month has passed and I finished my Provenge treatment on January 12th. All in all, the worst part of the treatment was the leukapheresis, having a large needle in each arm for the 3 1/2 hours.

Once the treatment had been completed, my oncologist told me not to expect any change in my PSA when I had it tested on January 27th but maybe on the February test. So I was very surprised when I found out that my PSA had dropped from 13.6 to 7.5. I thought, 'Well maybe this stuff is going to help". I had such a negative outlook on it because all I had read concerning said it did not change the PSA or reduce the size of the tumors.Hopefully the February PSA will drop further.

I've been trying to decide the best next step in my treatment when Provenge stops working. The oncologist recommends D.E.S. next and afterward, Zytiga with prednisone. My thoughts are instead of Zytiga, use Xtandi because it does not require the predisone. That way if the Provenge is still working in a any way, I will not be compromising its ability with the prednisone. That's something to talk about with my doctor on March 6th.

I have changed my diet somewhat. I am not going vegetarian or vegan as some do but I have reduced my dairy, stopped eating red meat, upped my raw vegetable intake, am now drinking green tea daily, and added a omega-3 supplement. I have no idea if this is going to have any impact on my disease at this late stage but I am willing to give it a three month trial. The worse that can happen is I will lose a bit of weight and that would be a good thing. I am also walking 6 to 8 miles a week.

My attitude is still positive, a bit stressed but nothing more. I still have a bit of difficulty realizing I have advanced stage 4 prostate cancer mainly because I still have not experienced any serious symptoms. I have only had a bit of back pain and that was only for a few days in December. My health is still good and I continue to work full time.

My spiritual well-being is good. I am a Christian. I feel it is a essential part of my treatment. I do not have what might be called unrealistic expectations concerning healing and my faith but the support I receive by my fellow brothers and sisters is especially comforting. I know when things start to get tough, they will be there to help in whatever way they can.

I have found myself reaching out to men I know who are in their 40's or older, telling them how essential it is to be tested annually. For those over 50, I say they need to see a urologist and have a full examination. My cancer was not found by my PSA number but by DRE and I had been seeing a urologist since my early forties. I work for a large company and I have emailed human resources informing them of my disease and that they need to recognize that September is Prostate awareness month and they should inform their men employees of the importance of being tested as they do the women when it comes to breast cancer. They stress health and wellness because of insurance costs but prostate cancer does not seem to be on their radar screen. My treatments are costing them a hell of a lot of money. Anyway, whether they take my advice or not, it salves my conscience somewhat to know I am doing something I feel is important.

My next post will be after my March meeting with my oncologist. Until then, for anyone who reads this, thank God of each day, keep a positive attitude, and reach out to others who may need support. God bless.

I got the results from my February PSA test. It has dropped from 7.5 to 5.04. Yea! And still with no outward signs that I have cancer. I thank God for that.

So I continue getting my monthly shots of Lupron and Xgeva along with the blood work for PSA. They were not testing to see what my testosterone level was and asked they begin it. So I am now in a watch and wait time period to see how long the Provenge works. I will be getting new scans in May.

I got a copy of my medical records, at least some of them. I know there are things missing, just do not know what to ask for. I have asked for copies of my more recent bone and cat scan. Still working on that.

Below is a more accurate listing of what I have experienced since being first diagnosed.

11/10/2010 - Age 56 - PSA 2.0 - biopsy - 5 of 12 cores Gleason score 4+3 = 7
01/05/2011 - da Vinci prostatectomy Gleason score 5 + 4 = 9 - negative margins
01/08/2011 - develop ileus, drainage around foley catheter
01/11/2011 - surgery for ileus
02/02/2011 - surgery for leakage, stents inserted into bladder
02/16/2011 - catheter removed, total incontinence, impotence
03/16/2011 - stents removed
06/01/2011 - PSA .5 - start Lupron and Casodex - urologist now says seminal vesicals were involved.
09/10/2011 - PSA <0.1 removed from Lupron due to suicidal tendencies
11/30/2011 - surgery for penile prosthesis, incontinence down to 1 pad a day
11/19/2012 - PSA 2.40 - removed from Casodex to see if it is the cause of rise in PSA
01/30/2013 - PSA 43.60
02/07/2013 - PSA 48.4 - bone scan reveals extensive bone mets - hip, pelvis, spine, ribs, skull. Placed on Lupron with continued Casodex. Lupron tolerated this time.
02/15/2013 - radiation on hip, PSA drops to 1.16
09/03/2013 - PSA 1.62
10/07/2013 - PSA 2.77
11/04/2013 - PSA 5.33
12/21/2013 - PSA 13.6
12/26/2013 - PROVENGE treatment started
01/27/2014 - PROVENGE treatment has been completed. PSA drops to 7.5
02/27/2014 - PSA drops to 5.04

Well, another month has gone by and another PSA done. The downward trail has hit bottom and I am again on my way back up. It went from 5.04 to 5.75. It is not a great increase but a disappoint just the same. I am still blessed with not having any serious bone pain, only a general achiness that really could be anything.

My stress level has increased. I find myself constantly thinking on the cancer which is not a good thing but I do not know how to stop. The end result of this stress is I am constantly moving my legs and flexing my toes. My psychiatrist is not concerned enough to add anything to my drug regimen for bi-polar and I know he is right because being a recovering addict, any drug that can effect my mood will be abused. Still, it is very irritating to not be able to completely relax.

One of my ways of keeping in touch with where I am at is to journal. It helps me focus on what is truly bothering me and allows me to vent even if it is only on paper. I also write poetry, Christian poetry to be exact. It is an outlet for me to share faith with others. The following poem I wrote for a friend who is also battling cancer but I know it also applies to me and to anyone else who finds themselves in a battle for life. I add it here.

The Long Walk Home

There is no other,
It is what it is;
Though you pray for another,
My strength is in this.

It does not make sense,
This pain that you bear;
And though you feel darkness,|
My Spirit is there.

You battle through each day,
From morning til night;
The pain in your life,
Your weakness, My might.

It's hard not to feel fear,
To wonder how long?
But be of good cheer,
My presense is near.

Love, it surrounds you,
From family, from friends;
But My love is in you,
And it never ends.

So take joy in each new day,
Show love from the heart;
Take comfort in knowing,
There's no end, just a start.

Another month, another PSA. It went down from 5.75 to 5.21. I'll take that! Down is always good.

I've been struggling with stress for the past few months. I've developed this habit that either I am constantly flexing my toes in my shoes or my legs are bouncing up and down while I sit. Very aggravating. My psych doesn't want to give me anything for it due to my past history of drug abuse. I understand his concern but I need to figure out a way to stop it. Heck, I even flex my toes while driving and my wife can tell because the speed of the car varies. Well, that is minor when you consider I have no pain, no outward signs of cancer. I'm handling the Lupron shots well, very few hot flashes. I do have more trouble remembering but I've never had a great memory. And to think I work as a computer programmer.

I read yesterday of another person on this website dying. I had followed his story since I found this site and was very saddened by the news. He fought a good fight But there came a time when he knew it was time to lay down and take the next step into the afterlife. I believe there is a life after this one. What or how it is, I don't know. As a Christian, we speak of it as heaven and of course, it is stated in the New Testament that to get there, you must accept Jesus as Lord and Savior. Is that the only way? I wonder. I guess I'm too liberal in my faith. I am not one who goes about speaking badly of other beliefs. My faith is mine. If I get to heaven and realize that there were other avenues, well, that will be fine with me.

Here I am rambling on about things that really do not pertain to prostate cancer but this is my story so I'll say what comes to mind. I miss sex. I have not had sex now in nearly two years. The Lupron kills the sex drive but it does not kill the memories. Before the prostate cancer, my wife and I had a good sex life. There were the times when it seemed more of meeting a need than one of passion but even so, I always enjoyed giving and receiving satisfaction.

I have a penile pump so if I wanted, I can have sex if I chose to. A week or so ago, I said, "well, even though I'm not horny, I'll pump myself up and go see the missus. Well it had been so long since I had inflated myself that I could only take a little 'air' before it pained me. Poor thing looked so pitiful. What a waste of money. And again, I was saddened. And mad. Damned doc screwed up the operation and screwed me up royally. I have fantasies of going in his office and blowing his head off but that is hard to do if you don't own a gun.

For all you new guys who have just been diagnosed and am wondering what to do, think hard and do your homework before you say yes to the knife. Find out what your options are and don't limit your search to your hometown. This is your life and you may think having the surgery is the quickest way to get rid of the cancer but that is not so. Think about how much importance sex is to you, about how good it is not to piss in your pants, or wear a pad as I do daily. You may have known your doctor for years as I had and think he has your best welfare in mind but HE IS NOT YOU. The decision you make here has far reaching results.

Well, time to step off my soapbox and stop preaching to the crowd. I think I will close with a poem I wrote to my wife on her birthday a week ago. It goes well with my lament on lack of sex.

A Love That Never Dies

In the darkness of the bedroom,
I look upon your form,
Remembering the curves of your youth,
Replaced by the lines of time.
Yet these lines speak far more to me,
Than of the time gone by,
They speak of your love for me
In ways I can't describe.

Memories flood my mind,
Of the times when we made passionate love.
In early morn and late at night,
The joy it gave to draw you near,
To feel your hips, to touch your breast,
To become one as husband and wife,
These are memories I'll always cherish.

Today, our love is different,
Changed by the course of time.
And yet the love I have for you
Is far greater today than of our youth.
I love you because you love me
With a love without reserve,
A caring that goes far beyond
The passion of sex.

I will always miss sexual intimacy,
It's an ache that will never go away,
But I take comfort in knowing you are there,
That I will never have to be alone,
Because you have chosen to always be my side,
Through the good times and bad,
With a love that never dies.

Until next time, God Bless.

I was going through the latest entries and realized they still had me listed as T1b. I am a M1b, I have many bone mets.

That said, I just want to vent. Lately my moods have been going up and down. Being bi-polar, that is a danger signal. I have my 3 month appointment with my doctor in two weeks. The last time I saw him, I told him of my anxiety, my inability to not keep my feet and toes from moving all day long. Toes, I constantly am flexing my toes even when I drive and you can tell it by how the motor revs. He did not think much of it and said it was just a way to relieve stress. Well, the stress is still here and I have become easily irritated. My wife gets the brunt of it. Of course, it does not help when she starts telling me what I can and cannot do. I can get pissed off fast.

She says she's I've changed. When I tell her it's because of the medication (Lupron) I am on, she thinks I am making excuses. If she would read up on it, she might realize I am not.

Lately, I have used these little energy shots to help me get going and it concerned her. She thought I shouldn't be taking them. When I told her how tired I am, she thinks I am lying, that I am looking for an excuse to use drugs. When I tell her to let it be, she doesn't and of course I raise my voice in anger.
Last night, she asked if I loved her. We have been married for over 40 years and I did not think the question deserved an answer. Then she said I scared her. I guess my raising my voice is indicative that I am about to go off the deep end.

I'm tired, just damn tired. Tired of waiting to see if the PSA is up or down. Tired of waking in the morning and wondering how the day will go. Fearful of every ache and pain, wondering if it is the cancer. Angry when I go to the oncologist, tell him I want a new bone scan since it has been six months and the order for one gets lost in the "new" computer software now being used.

My cancer does not need a high PSA to be spreading. Provenge may be the newest and greatest drug therapy but I want proof it is doing something in regards to halting the bone tumors. If they are growing and the doc says, "Well that's normal on Provenge", which is possible, I will tell him, "this is my life", if you don't want to treat me with something else, I can go elsewhere.

As you can tell, I am angry. For those who read this, I apologize that I wasted your time.

I had a bone scan done on Thursday May 22 and had an appointment to review them Tuesday the 27th. Instead my oncologist called me Friday. Not good. He gave a brief explanation of what the scan showed. Basically my mets have grown and I have new ones.

This is what the report says:
spine: Interval increased foci of metabolic activity in the thorasic and lumbar spine.

Ribs/Thorax: Increased foci at metabolic activity in the ribs, most predominant in the left mid posterior ribs.

Pelvis/Hips: Interval development of new foci of increased metabolic activity in the left sacrum and right iliac bone.

Extremities: Slight interval increase uptake in the left shoulder joint.

Not a good report at all. I just got my PSA result and it is 9.23, up from 5.75. That's a pretty good jump in one month. Doctor is putting me on DES to see if it will help.

The past month I have begun to feel overly tired and weak. I also am not sleeping well due to constant need to urinate. I get up about every 1 1/2 hour. Then my elbows will start to ache. I find myself getting up around 4:30. I will get in my easy chair and try to read and cannot keep my eyes focused and will fall asleep. I seem to sleep better in it than in the bed.

Thank God, I have not experienced any true bone pain, only aches and pains that could be anything. My psychiatrist prescribed me a weak dose of Ativan to help with the constant anxiousness and it seems to be helping some. My attitude is for the most part positive. I have many friends around me who are constantly praying for me and my wife, who offer their services for anything we feel we cannot do. They are truly a blessing.

Anyone who reads my posts, knows I am a Christian and lately I have been blessed with several poems. Writing is a good outlet for me. One Sunday, a friend at church said she had a friend who had gone through something similar to what I was experiencing and asked me to write a poem with the name "The Pain is My Treasure". After church I tried to write about it but nothing came. On the following Tuesday, I awoke from a vivid dream and got up to write it down in my journal. I felt the Lord say to go ahead, the poem is there and this is what I wrote over the next two hours.

The Pain Is My Treasure

It's not what you think,
This pain deep inside,
No, what's in it is something
That I cannot hide.
Most think of the hurt,
The grieve it can cause,
But for me it's a pleasure,
For this pain is my treasure.

That does not sound right,
To consider it so,
For treasure is pleasant,
A joy to behold.
But for me, pain holds a memory,
Of a line in the past
Where I finally gave all
To Jesus at last.

There was fear in my holding,
Of what might become
If I allowed Jesus to come in
And sit on the throne.
So I fought in the darkness
Against the foe who was me,
Wondering why I was failing
To fight my way free.

The diagnosis was cancer,
The verdict was death,
It angered me to think,
I had nothing left.
A sadness descended
When I thought of my life,
Of opportunities squandered,
The pain cut like a knife.

The day that I gave up,
My failure complete,
Is the day Jesus bent down
Set me up on my feet.
The look in His eyes
As He looked upon me,
Spoke of the pain He endured,
To make His treasure complete.

Jesus said it is not over,
Though your days have been numbered,
You've been given the treasure
To know how days are measured.
It's not hours or minutes
That make up a life,
But the love shown to others,
Through My Spirit inside.

So when I wake in the morning
With an ache or a hurt,
I'm reminded of His joy
Through the pain He endured.
So my hurt is a nothing,
Just a reminder today
Of His promise of forever,
My pain is my treasure.

Until later, Craig

Another month, another PSA. I am grateful to report it has dropped to 6.26. I was hoping for more of a drop but my oncologist reminded me it had only been three weeks since I started DES. And he's right, I need to give this drug more time to work. Hopefully, it will drop further. I do not experience anything in the way of side effects. The dosage is 1 mg. It is now considered a specialty drug because it is used so little so I have to get it from a compounding pharmacy. My insurance will not cover it but it is only $25.00 so it doesn't matter.

At my last visit with the oncologist, I asked him if my PSA stayed where it was, would he be happy with that and he said he would be very happy. I am not sure how to take that. So many men on this site talk about getting down to undetectable levels. Mine has not dropped below 1.2 since it was discovered I had bone mets.

I got copies of my last two bone scans. I must say they were better than I expected. The worst one was my first back in Feb 2013. The one from November showed significant reduction in mets though there were new ones. This last one in May is almost as bad as the first, especially in the pelvis, middle back and chest.

I am still struggling with anxiety and some depression. I have changed my medication by increasing the Seroquel and that has helped but it is hard to truly be happy. My wife has become possessive of me. She complains if I go out more than twice a week. She is scared of what she is going to do financially when I die. Hopefully that is far into the future.

I have no life insurance outside of what I can get through my employer. Being bipolar took care of that years ago. The insurance from work requires I be working 30 hours at the time of death. That might be a bit hard. Of course, if I was to die accidentally, she would receive it plus an additional amount which would certainly leave her financially secure.

Well, that's it for now. God bless.

My PSA has dropped again, from 6.26 to 4.16. So far so good as concerns the PSA.

I continue to feel tired and weak. Some days I don't want to do anything but lay around. I am thankful I have a job that allows me to work from home and rest if needed. I talked with my oncologist today and he does not feel too concerned about my being so tired. He says the DES should not cause it but I have become more tired since starting it.

I experienced a bit of pain this past month in my pelvis, enough that I allowed my wife to give me a half of pain pill. I am very leery on taking anything stronger than Aleve because of my past drug use. It is way too easy for me to convince myself I need painkillers. Every ache and pain I have I fear is from the cancer and I find myself dwelling on it to the point that I make it out to be more than it is. That is why my wife keeps the pills hidden. I hate to admit to such a weakness but it's the truth.

I had a great blessing this past month. A friend at church came across a great deal on vinyl siding and 40+ people from my church showed up on a 90+ degree Saturday to install it on my house. I have been working on trying to get the house as maintenance free as possible for my wife and this was truly an answer to prayer. I am humbled to have such a great number of people to support my wife and I through this time. It is amazing. Six years ago, I was in a place where I had been depressed for years and had isolated myself to the point, I had no friends. And it had been that way for so long, I had forgot what it was like to have friends. That is what drugs can do to you. I am so grateful my wife took the step to get me to go back to church. Today I celebrate two years of clean time and participate in a Christian based 12 step program leading the men's addiction class. I do not expect ever to be completely free of the desire to use but it feels so good today to be clean. And I thank it all to my wife. For 35 years we used a variety of drugs together but when she saw how depressed I was and that I was not getting better, she just quit and pushed "hard" for me to get help. It pissed me off that she was able to quit without help and I couldn't. (smile) I doubt I would be writing this if I was not in recovery. Well enough of this.

If you read this and find yourself relating to the drug and depression issue, know there is help out there. To face this disease and be battling addiction is a dangerous combination in my opinion. It is way too easy to get painkillers and having an addiction to opiates is a nightmare. You not only will be battling drugs and depression due to your habit but will develop a resistance where it will not be as effective. Enough of this also.

Until next time, God Bless.

Another month, another PSA. Up from 4.16 to 5.50. Frustrating! I keep telling myself I need to look elsewhere for help in battling this disease. My cancer just does not want to be tamed. I have a appointment on September 2nd. If the onc is not willing to be more aggressive, I will go elsewhere. Some tell me though I do not want to jump on the chemo wagon too soon while others say it is my best chance at slowing it.

I have told myself and my onc that my PSA does not have to be high for my cancer to grow but he thinks a PSA of 4 is acceptable and it isn't, at least not for me. As I said very frustrating. And the onc comes highly recommended.

Changing the subject a bit, I had a strange occurrence this past week. On a Sunday, I did some outside work and came in feeling really tired with a heavy feeling in my chest. I really did not think that much of it but it did not go away on Monday. I tell my wife, she freaks, and the next day, I am seeing the NP at my onc's office. She is concerned so sends me to a cardiologist who sends me to the hospital for a full workup on my heart and blood work. All comes back good so I am released on Wednesday. Thursday I get up still really tired, go get my monthly Lupron and Xgeva shot, come home and try to work but cannot stay focused on the job at hand. Around 11:30, my dogs drag me into the kitchen to feed them and I find myself so weak, I do not want to stand. I feed them and myself a little bit then go back and sit down at the computer to work. I first call my doc for my latest PSA. While on the phone, I begin to get this really heavy feeling in my hands. I tell the nurse something is still not right. She says call 911. I hesitate and instead call my wife. She says go lie down. I then realize this heavy feeling is body wide. I do not want to lift my feet so I end up calling 911 struggling to hold the phone to my ear.

I get a joy ride to the hospital where again I am pricked and prodded. This feeling lasted throughout Thursday until around noon Friday. On Friday evening, an MRI is done but because it is the weekend I do not get the results until Sunday morning. By then the heaviness is gone. The MRI reveals 3 mets on my neck vertebra but the doctor cannot say with confidence this is the cause. So here I am back home still wondering if that was the cause.

What complicates this incident is I am bi-polar and a recovering addict so I had to seriously consider if I was for some reason creating this condition. I am not depressed and I am not manic. I feel quite normal. But my mental illness and addictive personality does complicate how I address my symptoms. When I am not feeling well be it anxiety or pain, I must ask myself if the anxiety is bad enough to take something, is my pain great enough to warrant a painkiller. I do not keep these medications readily available to take. My wife puts them up so I have to ask for one. This gives me time to really consider what I am feeling without just reaching for something because I want it. And this works for me. I have only asked for a painkiller stronger than Aleve twice. And the anxiety medication is not taken on a regular basis so I feel pretty good about myself. So why would I want to create an incident that puts me in the hospital? I do not think it was brought on mentally but there is no way to prove one way or another.

Today, I feel pretty much okay. I am still tired and I weaken easily. I still have aches and pains in the pelvis, hip, and chest but nothing serious enough to worry about. It just lets me know I'm alive. HA! Anyway enough for this post. I must get back to my real work. Until next time, God bless.

Another month gone. When I was first diagnosed with bone metastises, I felt that my time left was going to be short. I am more hopeful today though my cancer continues to progress.

I had my monthly PSA test done on September 11th. It showed it had gone down from 5.5 to 4.35. That's good. On September 15th, I had a bone scan. It revealed that I had new metastises and the existing ones had not changed. That is bad. Overall it shows my cancer does not require a high PSA score in indicate it is growing. And I had been telling my oncologist this for several months. A couple of months ago when my PSA was 4.25, I asked if he was happy with it and he said yes. I then asked if it stayed at around 4 for the next year, he said he would be very happy. I then reminded him that my cancer grows even with my PSA is low and he agreed. Well I am now changing oncologists. I must take a different approach to dealing with this. Lupron and DES is not adequate.

I continue to deal with fatigue. If I push myself like mowing the lawn, it takes a couple of days to get my strength back. And my yard is 'small'! The oncologist I was seeing was baffled by my fatigue, saying it wasn't the cancer and the drugs usually do not cause it. He offered my Ritalin for it and I'm thinking, "Right, I am a guy who used meth for five years and now you are giving me my candy back.!" I turned him down. I know myself well enough to know I would start abusing it almost immediately. That stinks but I would rather stay clean during this time than sacrifice my sobriety on something I can work around. Oh well, life goes on.

Another month and a big change in PSA. It went from 4.35 to 8.4. I think that would be considered a major issue, to double in a month's time.

I am going to my new oncologist today. It's time to change the game plan. I have been saying for months I need to get really aggressive with this cancer. I am thinking I need to doing something I read about a few months back, start chemo and continue the ADT. Maybe even change the ADT to something stronger. I know if I go this route I can expect major side-effects but I do not know what other options I have.

I have developed jaw pain on the right side. It is not a tooth, it is in the joint. So when I go today, I will probably have to have some type of examination to determine why it hurts. I have been on Xgeva for nearly two years and it is known as with other biophosphates to cause necrosis of the jaw. If I have to go off the Xgeva, how long will it be before I start to have issue with brittle bones and an increase in pain. At this point, my pain level is still pretty low for me. I've been told I have a high tolerance for pain. Even so, when I really hurt, not only do I suffer but those close to me will suffer also.

I continue to battle my depression. I have had a few days this past month where I really struggled. Be bi-polar gives the treatment of my cancer of different spin. It's hard to have a positive attitude, to be in the battle so to speak, when mentally you feel yourself crashing. I do not like to say I am suicidal, for I know I am not truly to that point, but when my depression gets really bad, I have to battle thoughts of suicide. I have a doctor appointment with my psych Thursday. I dread this almost as much as going to another treatment because it may mean having to go through the merry-go-round of trying different medications until a good one if found. Even so, I am not giving up at all. I will do what is needed. I will fight the good fight and will not lay down my weapons of warfare until I know the battle has been won. As a Christian, I know victory is mine no matter what.

Another month where my PSA has doubled. It went from 8.4 to 17.9. Or fun! On top of that I have broke the fifth metatarsal in my right foot. Did nothing but squat down and felt it give. So I have a bit of pain to deal with.

On the positive side, I am going to participate in a drug trial where one arm gets Xtandi and Zytiga with Prednizone and the other are gets only Xtandi. Either way I will be starting a new treatment.

I am still struggling with some depression and am concerned the new drugs will make it worse. No matter, I am in it for the long run. Until next time.

First the good news. I was approved for a clinical trial where one arm uses only Xtandi and the other Xtandi and Ztiga together. I got into the Xtandi alone arm which disappointed me as first but who knows, it may turn out to be a God send. In the month that I have taken it, my PSA went from 20.9 to 9.6. That's a pretty good drop.

Now the downside. I have been experiencing more pain and have found myself having to take pain medication on a regular basis. I have pain in my pelvis which is fairly new. I have had slight bouts of pain in the past. Most of my pain comes from my neck. It feels like a major muscle ache, I can only turn my head slightly left and right. It I do not take anything for it, it causes me to have a really bad headache. My oncologist is sending me to get an MRI done and to see a nuerosurgeon. He said my top vertebra has a hole it in. Because it seemed to have stabilized, he had not been concerned about it but now with the neck pain and the slight tingling in my right hand and foot, it's time to see if something serious is going on.

The nurse running the clinical trial mentioned putting me long acting Dalaudid which scared me. As a recovering addict, being on something like that would really cause problems. Besides I did not feel my pain had reached that level. So I am going to receive a muscle relaxant. Still can become habit forming but less of a problem.

The Xtandi had caused me to have mood swings, more than in the past so I must deal with them. I am so thankful for the many people I have around my wife and I who are willing to help support us through this ordeal.

I'll keep you up to date on what the MRI shows. Also next month I get another bone and CT scan. Until then.

It has been a little over a month since my last update. A lot has happened in that time, borh good and bad.

First the good news. In the two months I have been on Xtandi, my PSA has dropped from 20.9 to 5.79. Also my latest bone scan (I get one every 8 weeks due to the clinical trial I am in) showed no change to the prior one. That is the first scan I have had in over a year where there was not any progression in the bone mets.

Now the bad. I have suffered more pain in the last month or so since having been diagnosed with the bone mets. The left side of my pelvis can give me a really good jolt of pain that will shoot down my leg. I will find it difficult to get comfortable in a chair and standing up is not much better. The battle to take or not take pain medication is a strong one. My onc gave me something to battle the nerve pain which he says is what I feel in my leg and it has helped but not completely. Being a recovering addict makes it very hard to be truthful with myself.

Fatigue continues to be an issue. I tire easily but I cannot stop life just because I am tired. I must continue to work, both at work and at home. I have many projects that need completing but it only takes a few minutes to tire, hurt, or both. I get angry then I get sad.

And my broke foot is not healing. What is a small simple fracture continues to give me pain. It has now been 11 weeks in a boot and I know when I stand without it on that it cannot take much stress.

The worst pain is the death of my youngest daughter. She committed suicide on Dec 17th. It is a long sad story which I will not bother you with except that she was sucked into the drug scene in her teens which led to her being victimized by an older man who got her to into stripping for a living. The lure of easy money and drugs took her life and my heart cries whenever I think of her. As a father, I feel I did my best at trying to stop her but after she left home, I had to concede I no longer had any control. I loved her dearly. My son and other daughter have been so supportive during this time even as they grieve. My son is especially sad because the two of them were fairly close. As a person who battles mental illness, there was a part of me who knew my daughter on a level others may not have. I knew she had mental issues that were not being addressed. As a recovering addict, I knew how the drug use was as much to cover up the pain of mental illness as to get high. Her death highlighted my own feeble attempts at suicide.

Every day I battle myself on two fronts,
1- I must keep strong mentally. Being bi-polar means I cannot escape the fact that I must be aware of how I am feeling. My mind can be my enemy. If I allow myself to slip into depression, I too will become suicidal. I must admit that my mind can play tricks on me and I will not even be aware of what is happening. That sucks.

2 - I must work my program when it comes to my addiction. With the onset of pain, I now have my medication available at all times where previously I had my wife hide it so not to tempt me. The pain in my pelvis is definitely there. It is no illusion but I must not overate the severity of it. When I brought up the pain issue with my onc, the nurse overseeing the clinical trial I am in offered to put me on demerol with something stronger for breakout pain. I said "absolutely not", though my addiction thought, "YES!". Instead I have been prescribed something for the nerve pain which is non-addictive. And it has helped. I has kept my use of pain meds to around 2 a day. I also take a muscle relaxant for the continuous stiff neck I have. Docs cannot figure that one out but it causes me a lot of trouble. I can only turn my head a little to the left or right without it hurting and if I do turn it and hold it for awhile, it really hurts to turn it back. Just a lot of crap to put up with.

I am continually thankful for the large Christian family who has helped me and my wife out so much during this time. She is recovering from surgery to her left arm to repair a torn tendon so we a great pair, me with my foot in a boot and she with her arm in this metal device to keep her from bending it too far. Our church has provided food, has helped clean our house, and have provided funds to help meet our mounting financial needs.

Life goes on and I am in giving in at all. God's blessings on all who read this post.

It's been a lousy month. First I get the news that my foot has not healed so I get to wear this damn boot for up to another 16 weeks along with a bone stimulator at night to see if it helps. At this writing, 3 weeks since seeing the doc, nothing has changed, I can tell it still has not healed completely.

Concerning my PSA, it went down to 4.4, a drop of a 1.5. That's good, it needs to hit zero. The bad, I had a really bad bout with pain in my pelvis which caused me to end up in the hospital for a day, only because it scared my wife so much, she insisted I go. She feared I had broke it. Nothing of the sort but because of the increased pain, the onc has prescribed me a Fentanyl patch to deal with constant pain, with the percoset to back it up. Just what this addict needs. Crap!!!

With the onset of pain and it not being caused by a break, I have been disqualified from the clinical trial due to disease progression.

I just finished 10 rounds of radiation to the left side of my pelvis and it seems to have helped. I took of the Fentanyl patch yesterday and have not used any pain meds in over 24 hours. Now if I can only get this depression I am in to go away. I feel it is due to the pain meds and the battle I must fight to keep them from taking over.

I see the doctor Monday. Hope for a good report.

How blessed it is when a fellow traveler writes and takes you for posting....and reminding I need to update.

I have had my ups and downs these last two months. Nothing major, just to continuing battle with our common enemy.
My foot continues not to heal but I was told to not use the boot I was in any longer because they felt my uneven gait could be the cause of some of my pain. I just must be very careful. The past month saw my PSA rise from 4.29 to 5.27. My onc was unconcerned but I was. It's hard not to take any PSA increase without a little bit of fear. Part of me expected the jump when the previous PSA only dropped .21. The leveling off signaled to me that the effectiveness of the Xtandi had reached its peak.

I am to start Zofigo on the 22nd. I am still not sure if I want to start it as yet. This is due to the fact my pain level has dropped considerably with the radiation of the pelvis. In my last post, I spoke of removing the Fentanyl patch. Well, I did return to using it. I was still experiencing pain on a regular basis and it was a toss up between taking several pain pills a day of going back on the patch. But as the month wore on, I became aware of my growing dependency on it and found it hard to determine my true pain level. As a recovering addict, I am constantly monitoring myself and yes, my mind does play tricks on me. (Psst, you need this dude. After all, you're using it as prescribed.) Anyone who battles addiction will tell you how easily it is to justify your actions. Relapse is just one step away if you let your guard down.

Two weeks ago, I went on vacation to see family and because my fatigue was so great, the onc said to stop taking the Xtandi for the week of vacation. It took a couple of days but my energy level did return, not completely but enough to enjoy taking time with friends and family. When my wife and I returned last Saturday, I, again, took off the patch and the next day restarted the Xtandi. I did suffer some withdrawal from the patch but what surprised me was how much the Xtandi caused my pain symptoms. The joint and muscle aches, and yes, the bone pain returned. I had to bold those words. The Xtandi can cause bone pain. You can look it up yourself. It is listed as a possible side effect. I was disqualified from the clinical trial due to bone pain because my onc and the nurse running the trial both thought my bone pain was the result of my cancer spreading. But with a bone scan showing no progression and having had the experience of being off Xtandi for a week and starting it back and experiencing bone pain, I am convinced Xtandi is the cause of it. That said, I am under the impression most men start Zofigo due to severe bone pain and if I am not experiencing it at this time, I question the wisdom of using this treatment at this time. I have voiced these concerns to my onc but he feels that combined with the Xtandi, I will be able to see a significant reduction in my bone mets which I have mentioned before are many. So it's a go for Zofigo on Wednesday.

Well I have rambled enough. I leave you with a poem I wrote about my condition a couple of weeks ago.

Challenges

Pain rarely goes away,
Maybe, just maybe for a day;
To find relief I medicate,
Which clouds my mind,
Makes it hard to think.
To try and work
While in this state,
Is to make stupid mistakes.

I cannot remember the simplest things
Though told and told and told again.
How frustrating it has become,
And fearful of what is to come.
I write a note so to not forget,
Then misplace the note, now where is it?
I think it's here, no maybe there,
Oh what's the use, I do not care.

As for fatigue, do not ask me;
It makes me tired, just let me be.
The little things I use to do,
Now saps my strength and leaves me weak;
The simplest things, they exhaust me.
Then I get angry and want to scream.

Yet today's today and this I know,
God's hands on me, He is in control.
No matter what this day may hold,
I thank you Lord for love and grace,
It's by Your strength that I run this race,
To overcome the obstacles that I face.

God Bless.

It's been a couple of months since I updated my story. I've had my ups and downs, the good and the bad.
The good, my PSA has dropped to a low of 2.82. That's the lowest its been since August 2013. The bad, it has come at the cost of having to battle extreme fatigue. Anything strenuous just knocks me out. I mean, 15 minutes of work in the yard and I am totally wiped out not just for the rest of that day but often for the next two days.

I am currently taking Xtandi, Xofigo, as well as a monthly shot of Lupron and Xgeva. I just started back on the Xgeva after a 7 month sabbatical due to a broke foot that would not heal. And it still not completely healed. I mean I can shift my foot a certain way and feel pain where it broke. I guess it is just going to be a weak place from here on out. So I must be careful with it.

And I still battle pain. I started Xofigo three months ago and from what I had read from other men, I fully expected to have my pain go away. It didn't and left me confused. Being a recovering addict, I knew there was a part of me that wants the drugs. The inner battle just does not quit no matter how long you have been clean. And this is where the confusion came from. Was I making up pain to justify the medication?

This question came up back in April when my wife and I went to spend a week with our daughter. During this time, I was told to leave off the Xtandi so my energy level would return. And it did but during this time, the addict in me was waving flags saying "Feed Me!!" in big bold letters. So when we returned home, I took off the Fentanyl patch and did not replace it. I was good for about three days before the pain returned. When it did, the question arose over why I was able to go three days without pain. So I went back and reviewed the side effects of Xtandi which I had started back on our return. And sure enough, Xtandi can cause bone pain...and muscle pain.....and joint pain. Oh fun!

The stuff is lowering my PSA but at the expense of having to deal with pain. I was also confused when my onc decided to place me also on Xofigo. Most men who I have read about receive it after they have gone through chemo (taxotere), given when the pain has become so immense that little else will help. And here I am getting prior to all that. Yes, I have pain but nothing like what I others have described.

My onc felt the Xtandi and Xofigo would work great together in a synegenic way. Well I started it but I did get a second opinion before I did.

I guess it is working seeing my PSA continues to trend downward but as I said at the outset, my fatigue is really bad. And it hasn't stopped the damn pain.
I went about a month without the Fentanyl patch trying to stave off the pain with pills but when I got to 8 a day, I knew I might as well go back on it. And when my onc asked me about the pain and I answered, he doubled the dose. Oh, great!! Just what I need.

This past Saturday, I once again took off the patch to get a good reading on where my pain was. I lasted around 12 hours. I ruined our attendance at church by having to leave early. And I pissed my wife off because I did not tell her what I had done. But being honest with myself is a battle within itself. I gave my wife a small cash box with a lock on it a couple of weeks ago. When she asked me what it was for, I told her it was for my drugs. At first she refused to use it then I went and brought out the medications she supposedly had hidden. I told her she was getting lazy in her hiding and with them locked up, I would not be tempted to seek them out. Now that is me, 59 years old and still battling an addiction I started at 16, an addiction that I know helped bring on the bi-polar I also have to deal with. But I'll be damned if I am going to let this cance take me down by re-igniting my addiction. I will end up killing myself with the drugs long before the cancer can take me. To hell with that!

Move on...I have decided to go on disability come the first of next year. A friend has been pushing me to do it saying I should not wait until I can no longer enjoy whatever amount of time I have left. And I have to agree. These treatments do not seem to last long before I am on to the next. There are things I want to do, like travel, before I lay my body down to rest.

I have over the last few weeks been training a couple of men on the job I do. Now that just feel weird. It tells me that another phase of my life is soon to be over. I have worked since I was fourteen and being a good worker was something that helped define my life. I know what I am doing has been needed for a while because what I worked on as a programmer, no one else knew. So if I had gotten really sick, they would have been in a pickle. So it is a good thing. I must say I work for a very good company. I went to asked my supervisor a week ago what was going to happen to me when I have finished training and she said that I could work for as long as I felt like doing it. These last two years, I have worked mostly from home, in my "spare" time. I rarely get 40 hours in but my salary has not changed. I have been able to keep up with the work load but there are days when I am so out of it that trying to work is beyond me. My memory fails me. It becomes this big dark hole where memories just fall out. It gets scary. So yes, the time has come to call it quits. I will miss it at least for a while.

Going on a cruise to Alaska the 4th of August. My wife is so excited. I have yet to get there. My prayer is that I have enough energy not to ruin it for her. Once again, I'll be stopping the Xtandi with the hope my energy level will come back up. God, I hope so. I do want to enjoy it for myself as well as her.

Well, I close with two poems. As anyone who has ready my ongoing story knows I am a Christian and I have taken to writing poetry these last two years which is quite strange but wonderful also. I hope you enjoy them.

Challenges

Pain rarely goes away,
Maybe, just maybe for a day;
To find relief I medicate,
Which clouds my mind,
Makes it hard to think.
To try and work
|While in this state,
|Is to make stupid mistakes.

I cannot remember the simplest things
Though told and told and told again.
How frustrating it has become,
And fearful of what is to come.
|I write a note so to not forget,
Then misplace the note, now where is it?
I think it's here, no maybe there,
Oh what's the use, I do not care.

As for fatigue, do not ask me;
It makes me tired, just let me be.
The little things I use to do,
|Now saps my strength and leaves me weak;
|The simplest things, they exhaust me.|
Then I get angry and want to scream.

Yet today's today and this I know,,
God's hands on me, He is in control.
|No matter what this day may hold,|
I thank you Lord for love and grace,
It's by Your strength that I run this race,
To overcome the obstacles that I face.

____________________________________

Shall We Go For a Walk

God says,
Shall we go for a walk,
Take in the sights,
Through the forest of the moments
That make up your life.

If you look at your life,
Letting moments be trees,
It's easy to think
Of each tree separately.
But a tree's not a forest,
Or a forest one tree.
You must put trees together,
For a forest to be.

Though trees are all different,
No two are the same,
Each needs one another,
To be a forest of trees.
To look at a forest
To see all the trees
Is to know that their union,
Was created by Me.

Not all trees are pretty,
Not all trees are tall,
Some are quite ugly,
Some are quite small.
But all are important,
A beauty to see,
When you look at a forest
Created by Me.

Now look at your life,
What do you see?
Can you see the forest,
Or only the trees?
To look at your life,
Thinking moments as trees,
Each makes you the forest
Created by Me.

It's been a couple of months since I updated my story. I've had my ups and downs, the good and the bad.

The good, my PSA has dropped to a low of 2.82. That's the lowest its been since August 2013. The bad, it has come at the cost of having to battle extreme fatigue. Anything strenuous just knocks me out. I mean, 15 minutes of work in the yard and I am totally wiped out not just for the rest of that day but often for the next two days.

I am currently taking Xtandi, Xofigo, as well as a monthly shot of Lupron and Xgeva. I just started back on the Xgeva after a 7 month sabbatical due to a broke foot that would not heal. And it still not completely healed. I mean I can shift my foot a certain way and feel pain where it broke. I guess it is just going to be a weak place from here on out. So I must be careful with it.

And I still battle pain. I started Xofigo three months ago and from what I had read from other men, I fully expected to have my pain go away. It didn't and left me confused. Being a recovering addict, I knew there was a part of me that wants the drugs. The inner battle just does not quit no matter how long you have been clean. And this is where the confusion came from. Was I making up pain to justify the medication?

This question came up back in April when my wife and I went to spend a week with our daughter. During this time, I was told to leave off the Xtandi so my energy level would return. And it did but during this time, the addict in me was waving flags saying "Feed Me!!" in big bold letters. So when we returned home, I took off the Fentanyl patch and did not replace it. I was good for about three days before the pain returned. When it did, the question arose over why I was able to go three days without pain. So I went back and reviewed the side effects of Xtandi which I had started back on our return. And sure enough, Xtandi can cause bone pain...and muscle pain.....and joint pain. Oh fun!

The stuff is lowering my PSA but at the expense of having to deal with pain. I was also confused when my onc decided to place me also on Xofigo. Most men who I have read about receive it after they have gone through chemo (taxotere), given when the pain has become so immense that little else will help. And here I am getting prior to all that. Yes, I have pain but nothing like what I others have described.

My onc felt the Xtandi and Xofigo would work great together in a synegenic way. Well I started it but I did get a second opinion before I did.
I guess it is working seeing my PSA continues to trend downward but as I said at the outset, my fatigue is really bad. And it hasn't stopped the damn pain.

I went about a month without the Fentanyl patch trying to stave off the pain with pills but when I got to 8 a day, I knew I might as well go back on it. And when my onc asked me about the pain and I answered, he doubled the dose. Oh, great!! Just what I need.

This past Saturday, I once again took off the patch to get a good reading on where my pain was. I lasted around 12 hours. I ruined our attendance at church by having to leave early. And I pissed my wife off because I did not tell her what I had done. But being honest with myself is a battle within itself. I gave my wife a small cash box with a lock on it a couple of weeks ago. When she asked me what it was for, I told her it was for my drugs. At first she refused to use it then I went and brought out the medications she supposedly had hidden. I told her she was getting lazy in her hiding and with them locked up, I would not be tempted to seek them out. Now that is me, 59 years old and still battling an addiction I started at 16, an addiction that I know helped bring on the bi-polar I also have to deal with. But I'll be damned if I am going to let this cance take me down by re-igniting my addiction. I will end up killing myself with the drugs long before the cancer can take me. To hell with that!

Move on...I have decided to go on disability come the first of next year. A friend has been pushing me to do it saying I should not wait until I can no longer enjoy whatever amount of time I have left. And I have to agree. These treatments do not seem to last long before I am on to the next. There are things I want to do, like travel, before I lay my body down to rest.

I have over the last few weeks been training a couple of men on the job I do. Now that just feel weird. It tells me that another phase of my life is soon to be over. I have worked since I was fourteen and being a good worker was something that helped define my life. I know what I am doing has been needed for a while because what I worked on as a programmer, no one else knew. So if I had gotten really sick, they would have been in a pickle. So it is a good thing. I must say I work for a very good company. I went to asked my supervisor a week ago what was going to happen to me when I have finished training and she said that I could work for as long as I felt like doing it. These last two years, I have worked mostly from home, in my "spare" time. I rarely get 40 hours in but my salary has not changed. I have been able to keep up with the work load but there are days when I am so out of it that trying to work is beyond me. My memory fails me. It becomes this big dark hole where memories just fall out. It gets scary. So yes, the time has come to call it quits. I will miss it at least for a while.

Going on a cruise to Alaska the 4th of August. My wife is so excited. I have yet to get there. My prayer is that I have enough energy not to ruin it for her. Once again, I'll be stopping the Xtandi with the hope my energy level will come back up. God, I hope so. I do want to enjoy it for myself as well as her.

Well, I close with two poems. As anyone who has ready my ongoing story knows I am a Christian and I have taken to writing poetry these last two years which is quite strange but wonderful also. I hope you enjoy them.

Challenges

Pain rarely goes away,

Maybe, just maybe for a day;
To find relief I medicate,
Which clouds my mind,
Makes it hard to think.
To try and work
|While in this state,
|Is to make stupid mistakes.

I cannot remember the simplest things
Though told and told and told again.
How frustrating it has become,
And fearful of what is to come.
|I write a note so to not forget,
Then misplace the note, now where is it?
I think it's here, no maybe there,
Oh what's the use, I do not care.

As for fatigue, do not ask me;
It makes me tired, just let me be.
The little things I use to do,
|Now saps my strength and leaves me weak;
|The simplest things, they exhaust me.|
Then I get angry and want to scream.

Yet today's today and this I know,,
God's hands on me, He is in control.
|No matter what this day may hold,|
I thank you Lord for love and grace,
It's by Your strength that I run this race,
To overcome the obstacles that I face.

____________________________________

Shall We Go For a Walk

God says,
Shall we go for a walk,
Take in the sights,
Through the forest of the moments
That make up your life.

If you look at your life,
Letting moments be trees,
It's easy to think
Of each tree separately.
But a tree's not a forest,
Or a forest one tree.
You must put trees together,
For a forest to be.

Though trees are all different,
No two are the same,
Each needs one another,
To be a forest of trees.
To look at a forest
To see all the trees
Is to know that their union,
Was created by Me.

Not all trees are pretty,
Not all trees are tall,
Some are quite ugly,
Some are quite small.
But all are important,
A beauty to see,
When you look at a forest
Created by Me.

Now look at your life,
What do you see?
Can you see the forest,
Or only the trees?
To look at your life,
Thinking moments as trees,
Each makes you the forest
Created by Me.

The past month has had some great times and some very lousy times. First the good.

My PSA has dropped to 2.08. I am still taking Xtandi and Xofigo. The Xofigo really kicks my butt. It started off with mild side effects but each month, the effects get worse.

My wife and I went on a cruise to Alaska, a gift given to us by a dear friend. It was absolutely fantastic. The excursions to see glaciers, whales, and the Yukon are memories we will keep forever. During this time, my oncologist took me off the Xtandi so my energy level would rebound and it did to a certain degree. I still found myself falling asleep during shows I tried to attend in the evening so I ended up letting my wife and our friend go without me and I went on to bed. I also had to up my intake of pain medication which I expected I would have to do.

Now the bad. A few days after our return from the Alaskan trip, I had my monthly shot of Xofigo on a Wednesday and the following day, my onc increased my Fentanyl patch to 75 mcg. The combination of the two sent my body into a whirlwind of nausea, extreme fatigue, mental confusion, and the inability to have a bowel movement.

For a week I could hardly eat. I dropped 8 pounds which wouldn't be a bad thing under normal circumstances. And for several days, all I wanted to do was sleep. I was sleeping nearly 16 hours a day. Mentally, I was out of it. I would get confused easily and my memory was terrible which it not great to begin with. But the bowel movement issue really caused me a great deal of anxiety. The increase in Fentanyl dosage shut me down. I was having panic attacks. Ever since I had the bowel blockage due to the botched prostate surgery, I have feared having another. I was plying myself with laxatives of all sorts and nothing seemed to help much. For eight days, all I had was a couple of small movements, not enough for much relief. I would sit on the toliet, trying to push and feeling like I had no power to do so. What finally worked was drinking a"warm" 8 oz cup of prune juice with Miralax plus a strong herbal laxative twice a day. I had been drinking prune juice but it was a 12 oz glass at night with the herbal laxative. Having it twice a day while warm with Miralax and the laxative seems to make in work better. It's amazing how much having a good dump can make you feel. (smile) By the way the name of the laxative is Ultra-Lax and will be found in a health food store.

I will close with two poems, Christian of course.

Fading Away

Ghost of moon in morning sky,
Slowly fading with sunrise;
Reminds me that I am to die,
So I can live within Your light.

For so long,
I've waxed and waned,
Stubborn in this human frame;
Unwilling to yield unto the light
Even though I know it's right,
Truly it is a human plight.

Yet Your light shines
And I cannot hide,
No matter how much I try.
My sin of selfishness reveals,
Just how stubborn is my will.

A challenge, this is indeed;
To yield to You, to bend my knee;
To give to You, praise deserved,
To give my life without reserve.

Yet as the sun warms my face,
My heart is filled with Godly praise.
I think, how silly are my ways,
To fill my days by chasing clouds
That slowly fade away.

And so on this newborn day,
I thank You Father for your grace.
It is to You I give all my praise.
You are my love, You are my God,
For in Your light, I do fade,
So You will shine,
My Lord Jesus Christ.

____________________________________________

This poem is bothersome to me. I normally do not write of political situations but this is one that is never far from my mind. My heart cries to stir my brothers and sisters to prayer.

Darkness Spreads

The clock has stopped,
The spring unwound,
Hear birds cry
Their warning sound.
Upon the earth,
The darkness spreads.
While kings close their eyes
And turn their heads.

Crashing waves
And stone filled sand,
Twenty one martyrs
Stand man to man.
Black draped evil
With glinting knives,
Stain water red
As each man cries,
Oh my Jesus
Before he dies.

Praise, yes praise, it can be heard
While our cries of grief overflow.
Our adversary roars,
He paws the ground,
The blood of martyrs
Upon his mouth.
He snarls his threat,
Death to all
Who call on Christ,
Who bear the cross.

The kings bemoan
And beat their breast;
They call for peace
But get no rest.
We're seen as weak,
They call us fools
While our kings stand idly by
Hoping their own will arise
To stop the darkening tide.

But God is not silent,
Nor His hands tied,
He's calling us
Christians to unite.
The battle's before you,
Come be the light,
To drive back the darkness
Of this gathering night.

It has been nearly three months since I updated my story. I kept saying I would once I knew something positive was known from the combination of taking Xtandi and Xofigo together.

Well, I took my last shot of Xofigo at the end of September and I am glad to be done with it. It has left me with neuropathy in my feet and hands, mostly my feet. It also left me nauseaous for over a month and I have lost 25 pounds due to a reduced appetite. I have dropped from weighing 207 lbs to 183 which is not a bad thing, but definitely not the best diet solution.

My PSA has stayed steady with only a slight variation.
9/14 - 2.49
10/12 - 2.54
11/11 - 2.34
All in all, I am happy with it.

I had a bone scan on November 11, my first since completing Xofigo and made the mistake of getting a copy of it and looking at it before my oncologist did and I was shocked at how different it looked. There was so much more darkness on it which in my mind was the spreading of the cancer. But when I talked to my oncologist, he said it was great, that what I perceived as cancer was actually bone remodeling. He said the cancer itself had stayed the same and had not spread. That left me confused. So the Xofigo has caused all this bone remodeling but the cancer has not been affected. I asked if it was going to kill any of the cancer and he did not give me a clear answer.

What has also left me confused is my pain level has steadily increased the time I have been on Xofigo. From my research, this drug has normally been given as a palliative treatment for bone pain and usually toward the end of a man's battle with prostate cancer. For me to have it before Taxertere is unusual in my opinion but I think it is starting to be done this way more.

Anyway, my pain medication has gone from using a Fentanyl 25 mcg patch to a Fentanyl 75 mcg. The Percocet 5/325 has been replaced with Oxycodone 15 mg. And if I need to, I can change my Fentanyl patch every two days instead of three.

I am still trying to stay active in and around the house but manual labor leaves me not only exhausted but my pain level significantly increases which accounts for the increase in my pain meds. But I just cannot sit around all day. I am now on disability and will not be returning to a normal job. Thank God, I have both short and long term disability insurance to help pay the bills. I also have a small pension of 616.00 a month from my working at a steel factory to help supplement my income. Together, I am getting $2,828 a month with comes close to what I brought home prior to going on disability. My wife is now working longer so we are putting up a bit of money for future issues.

I went to the Social Security office a couple of days ago and had a really profitable meeting. I think God had me under his wing that day. I had a 10.45 am appointment but got there at 9:30. There was a long line of cars waiting to get in the parking area and a line of people standing outside. Just as I was getting into the parking area, a lady waved at me and said there was a handicapped spot that had just opened to the right of me. Sure enough, I found a spot without no trouble. I then went in and spoke with the security guard about how I could not stand in the long line outside and that I had an appointment. He told me to get a number and allowed me to go ahead and sit in an empty seat inside. I had not been sitting for 5 minutes when I was called to one of the windows where I proceeded to explain I was there to file for disability as a TERI case. I had brought my medical records and the letter I had last received from SS on how much I would receive when I retired. In the matter of 30 minutes, he had me signed up, he told me I could expect a check of around $30,000 for the past year of my having cancer and that I could expect to hear something within a week on my being approved. With me having my medical records that established when I was diagnosed stage 4, it made the approval much easier. He took several pages and copied them. So now I am waiting on hearing something from them.

Being without a job has had a depressing effect on me. I have worked since I was 14 and to now be at home with nothing to say I am making a living bothers me greatly. I keep saying I am going to do volunteer work at my church and I have actually signed up for one of the areas they say they need help but nothing has come of it. It has really pissed me off in a way. I find myself isolating and that is very bad for me. What with the increase in the pain meds, I feel I am falling back into my old drug habits and I am in a danger zone. I have had four people in the last month approach me with the idea that I should be using marijuana to help battle my cancer. Some have said that it has been proven to kill cancer cells at which I reply, "I have smoked pot off and on for more than 40 years and you are telling me that its going to kill my cancer?" Of a truth, if I start smoking again, it will become a morning to night habit. Yes, it will make me feel better, why else would I have used it for so long but it also changes my personality. I like to think I am laid back but I am actually just dulled to the point of not wanting to do anything. I'm happy but all I will do is sit around and get stoned. And worse, it will break me down mentally. Where I am still fighting from using more pain medication than necessary, if I relapse with marijuana, I will also start drinking again and mix it with the pain meds, the Ativan, the muscle relaxers. Basically I will fall off the deep end of the wagon where the bottom is getting suicidal. It is a mental thing for me. I just cannot use marijuana, period.

Well, I have truly updated my history this time. I think I have rambled a bit but so what.

I will close with a poem I wrote for Veterans Day.

The Homeless Vet

The man stood at the end of the ramp,
With a sign that said, "Veteran of Vietnam",
With scruffy beard and sad tired eyes,
My first reaction was to hide,
By turning my head and acting like he was not there.

Just another drunk or addict
Is what came to my mind,
How many did I see in a week's time,
Begging for money by telling lies,
My heart was callous so I turned my eyes.

But as I waited for the light,
I felt sadness for his plight.
What type of history was this man's life?
What had brought him to begging,
To living a life full of strife.

Then our eyes met and I felt caught,
I knew from his look,
He could read my thoughts,
And with a sigh, he turned
And continued his walk
While I felt guilt at how hard was my heart.

Then on impulse I called to him,
I asked if he'd like to come with me,
I was going to lunch and if he liked,
He would come with me
And have a bite to eat.

He stood for a moment,
I could sense hesitation;
This was not something
He had expected.
Still I could tell I had connected
With this man who was so down,
Who looked so rejected.

As he walked round the car,
The light, it turned green,
Horns began to blare,
People in anger screamed,
Even so I waited until he was in
Before leaving behind the angry din.

I pulled into a nice restaurant,
No fast food for this man,
I felt inquisitive stares
As we sat down in our chairs.
Here I was dressed nicely,
With suit and tie on,
With a man clearly a bum
With dirty clothes on.

He sat with a posture
That spoke of unease,
As I began small talk
Seeking to put him at ease.
I asked him his name,
Where he lived, about his life,
And slowly came this story
Of a life full of strife.

His name was Sam,
He'd served two tours in Nam,
Was wounded twice,
Before being sent home,
To a country where he felt
He no longer belonged.

He said he had been married
But just for a while,
For he found himself angry
Due to memories that were vile.
He tried to get help,
Was given drugs to help cope,
But the nightmares continued
So he began to do dope.

Slowly his life unraveled,
First his marriage, then his job,
He found himself drifting
From town to town,
With straggly beard and worn clothes,
He looked like a slob,
To the point he was rejected
Except by those who were lost.

I felt a deep sadness
For this shell of a man,
Who had served his country honorably,
Only to find himself shunned.
This offering of lunch
Felt so small when compared
To the sacrifices this man gave
So I could be free.

As we left the restaurant
And parted to leave,
I emptied my wallet,
Said I wish I had more.
He held his hand up,
Said I had been more than kind.
And with a hug and handshake,
We parted ways;
But my thoughts of this man
Hung with me for days.
He deserves more
For the sacrifices he made
Than the few scraps we give him
When we're having a good day.

Today I salute,
All those lost "Sam"s out there
Who wander our streets,
Fighting battles within.
Thank you for my freedom,
The life that I live,
Because you were willing to serve,
You were willing to give.

Just a quick update. As I looked back over the past year, I found that my bone mets have remained stable. The combination of Xtandi and Xofigo has worked for me. I would have wished that it had reduced my pain level but I am grateful that my cancer has not progressed.
My last PSA test showed it had risen to 3.11 which is still considered quite low but I know my cancer grows even when my PSA is low so even though I keep track of it, it is not the best indicator of how my cancer is doing. As long as it stays below 5, I will be okay with it. If my PSA starts to rise quickly again as it has in the past, I will know it is time to add another drug to the mix.

I still struggle with the fact that I am using a 75 mcg Fentanyl patch. I feel fine most of the time which causes me to wonder if it is needed but then I find myself over exerting myself and suffering for a couple of days. I truly hate this situation. I have starting seeing a therapist with the hope I can find an alternative treatment for my pain.

I found out on December 23rd that I had been approved for Disability retirement from Social Security. It took less than a month to get approval. I have already received a hefty check for the past year that they considered my disabled and will start getting a monthly check starting in February. I do have some concern in that I am technically still employed since I am still drawing short term disability. I have contacted SS about it but all I could do is leave a message. I guess I need to try harder to get through. I have moved the money they deposited in my checking account to my savings to prevent it from being spent until I know something positive about this situation.

Christmas was spent with my daughter and my two grandchildren. I enjoyed it but I did have some moments of sadness in that it brought back many memories of my deceased daughter for she was raised in the same small town my oldest daughter lives in. Her death will always leave a shadow at Christmas time. I do not think I will ever be completely over her suicide.

I have begun to volunteer at my church to keep me busy. Part of my volunteering is for those who are sexually trafficked. It's so easy to think negatively of some girl when she is caught prostituting herself while being underage, so easy to ignore the fact that when one is viewing pornography that the women who are often in these videos are not actually enjoying what is happening or the fact that our "enjoyment" contributes to their bondage. As has been said when it comes to being an addict that no one grows up planning to be one, the same is true about a girl getting caught up in the sex trade, she did not plan her life to be this way. Somewhere along the way, she was drawn into it by someone else and because of drugs, violence, or other circumstances finder herself locked into it with no easy way out. My daughter was a victim of such but I know for many she was just another prostitute junkie who found herself unable to bear the life hers became and killed herself. It pains me deeply that this is what her life became. It pains me to know that I contributed by my own use of pornography. I may never have had a prostitute but my viewing of pornography was enough to help keep some girl/woman in bondage. And for that I must repent.

Well, I sure did get off track at the end of this post. I will leave with a poem until next time.

Dogs and Prayer

Dark wet asphalt is speckled grey,
As it dries in the sun on this rainy day;
Walking the dogs while the clouds scurry away;
I talk to God in a conversational way.
Humidity is high, sweat beads on my brow,
But the dogs do not care, they are on the prowl.
Nose to ground so to gain a scent;
They raise their leg to cover it.
All the while I talk as to the air,
If people saw me, they'd wonder if I'm all there.
If asked I would tell them, I'm saying a prayer,
And if it looks strange, I do not care,
It is talking to God that is important me.

My prayers often ramble
While I'm on these walks,
I'll talk of my troubles,
Of those I know who are lost.
I'll ask for God's guidance,
Please give direction this day,
I'll thank Him and of course,
I'll give Him praise.

All the while the dogs wander,
Chasing scents in our way,
As I sweat in the humidity of this Florida day.
The dogs and I both cherish
These walks that we take,
For their important to us each in our own way,
For them it's the hunt, for me, it's to pray,
As we wander the streets of each brand new day.

Two months have gone by. I had to read my previous post just to remember what I have written. I have become very forgetful.

In my previous post, I said if my PSA rose to be over 5, then I would have to consider doing something more. The PSA test of last Monday was 5.42. My oncologist appointment was Wednesday and I asked him what he would use next and it will be Zytiga with Prednizone. I kind of thought it would be. He said that because I have had such a good response to the Xtandi, he expects the same from the Zytiga. And that makes sense. I have been on Xtandi now for a year and 4 months with my bone mets essentially staying the same. But I have also had Xofigo during my time on Xtandi so that must to figured into the scenario. Before any change is made, I will be getting a new CT and bone scan on April 8th. It will really tell me what the state of my cancer is. My last scan looked terrible to me but doc said what I was seeing was bone remodeling and the report I read said the same.

My oncologist seems to be taking the course where he is giving me the drugs that cause the least side effects. I have tolerated Xtandi well when I compare my symptoms to other men and I did survive the Xofigo though it made me very sick toward the end. Since my last treatment in September, I have lost 35 lbs. I now weight 170 lbs which the ideal weight for a man of my height. I haven't weighed this much since 1990. I really am not complaining about the lost weight. Everyone thinks I look great. Ha! I laugh and tell them I am like a used car, pretty on the outside but please don't look under the hood.

I have begun to see a therapist. The constant use of the pain medication wears on me and I know I cannot stop it. Today is a good example of why. This is day three of the Fentanyl patch and I hurt. I haven't done anything physical though I surely have wanted to. I just ache and have no energy. I have felt at times that I am experiencing withdrawal symptoms due to the patch. But the symptoms are not always the same, they change. So I am seeing this therapist to help me deal with all these feelings I am going through. I have begun to have mood swings and they are very hard to deal with. To be bi-polar and have to deal with this cancer has caused me to have feelings that are hard to figure out.

For example, back in September, while my wife was in Georgia taking care of her mother, I had my last shot of Xofigo and found myself unable to sleep. I was extremely agitated. On day four without sleep, I panicked and call 911. When I called them I had already taken four Ativan and two Seroquel. I wasn't in my right mind. If my wife had been there, she would have walked me through the time. Anyway, nothing much was done when I got to the ER. I was given a sleeping pill and they called a taxi to take me back home. That was an expensive sleeping pill.

So goes my mind. On the first day of my Fentanyl patch, my mood is up and it is not unusual for me to get a lot of things done around the house. The second day, my mood can vary depending on what I did the day before. If I overdid myself, I will be hurting. And if I complain to my wife, her response will be, "you did it to yourself". What empathy! It may be true but I really would like a little more compassion. (smile) The third day can be anything from just feeling tired to hurting like hell which require additional pain meds to keep me comfortable. This is another thing I discuss with my therapist. I need to let others help me especially seeing I have people willing to do so.

On a different note, we paid off our house today. It's a small house but it brings me comfort to know my wife will have a place to live when I die. Over the last few months, I have placed nearly everything in her name as a why to hopefully protect us financially. I was blessed with good insurance when I was working. Though the deduction was high, once we met it, they paid 100% of the remainder which all of us know is very expensive. Provenge, which I considered a waste of money, was $96,000. Xtandi is around $7500 a month. Xofigo is around $69000 for the six month treatment. Then of course I continue to take Lupron and Xgeva. So it has been very expensive to treat me. If Zytiga is my next treatment, it will be around $5,000 a month. That is why I chose to pay for Cobra insurance. Even though the cost is $1078 a month plus my deduction, it still is a lot cheaper than trying to find insurance on the Family Health Exchange that will cover me at a cheaper rate. I can start Medicare in November and will need a lot of help finding the right supplement that will be cheap enough to pay for but will pay for the drugs I take.

Well enough for this month. I leave you with a dark poem dealing with drug addiction.

Fighting the Wind

Falling, falling into an abyss,
Fighting, crying, that there is no release.
Wondering angrily the point of all this
As slowly I find myself too weak to resist.

Trying to smile to show I have faith
While the winds of my pain
Dims faith's flame at the wick.
I scream at this wind,
Words of frustration in air,
Knowing there will be no answer,
My pain is still there.

I lean on my wife, stop me I plead,
From the monster inside that's eating at me.
This sickness is weakening
The bonds of the demon in me;
Addiction smiles and fights to be free.

People try to soothe, they say its okay,
You need the drugs you take,
To keep your suffering at bay.
But where does pain end
And addiction begin?

I close the door and turn off the lights,
And in the dark I feel my body subside,
Thinking, it is okay, take me this night,
Is this a battle, I should battle to win.
Or hang my head in subjection
And say no to the battles,
I want this to end.

Two months and it's time to give a short update on where I am in this journey.

At the first of May, I had a bone/ct scan which revealed two new mets, one on my left tibia and one on one of my spinal vertebra. With the new mets comes new treatment. I am not on Zytiga with Prednisone. I cannot say it is causing me many more symptoms than what I had previously to taking it but here is what I deal with. Tiredness. You know what compensates for the tiredness....Fentanyl. Now that sucks. Who wants to take opiates to get a energy buzz. Yet that is what happens when I change my patch. The first day I get all this nervous energy which can make me productive or can have the negative effect of causing panic attacks. It can make it hard for me to swallow and when I cannot swallow, I panic big time. I end up taking Ativan to control the anxiety and go to slept propped up until the panic subsides.

I suffer lack of appetite. This was first brought on by the Xofigo and has not let up. I have gone from 207 lb last September to 155 lb today.
As for the confusion and forgetfulness, this has been ongoing for a very long time but it continues to worsen. I was asked by my pharmicist if I was still driving. I am but I am taking a long look at whether I should or not.

As for the depression, it is something I have dealt with for years so when I feel it coming on, I recognize the symptoms and try to head it off before it gets worse. I have been seeing a therapist now for around 5 months. It helps but I feel something else is needed to really get to what is bothering me and that is the amount of opiates I take. I am honest in my use. I am not abusing them but that does not change the feeling that I am using too much. I would like to find someone familiar with pain management who is not going to push more drugs on me but help me find ways to deal with my pain in what I guess is a homeopathic way.

Currently my wife and I are on a extended road trip. We left out of Orlando, FL on May 3 and since then we have been to Mobile, AL, the French Quarter of New Orleans, seen Antebellum houses while traveling Hwy 61 up to Vicksburg where we visited a Civil War museum contains the remains of an ironside boat pulled up from the Mississippi River. Next, it was to St. Louis, to Kansas City, then to Colorado to visit with my son and his family.

We left his house and journeyed to Moab AZ to the Arches National Park, then on to the Grand Canyon. Then it was up to visit Yellowstone then over to Mount Rushmore, then down to Missouri to see my brother. We are now in TN visiting my cousin and will leave tomorrow to see my daughter, returning to our home around the 10th. This has been one whirlwind road trip down on a shoestring budget where we stayed in some really lousy motels and ate peanut butter and jelly sandwiches for lunch.

This was my bucket-list and now it has been accomplished, I now much find something else I want to do before I die. I do not expect that to happen soon but you never know so I am trying to enjoy myself as best as possible with the little amount of funds we have.

I think I will close this out with a "Poem" I wrote today as I was watching the mess we are calling our presidential race. As a Christian, I get really upset when my brothers and sisters demand Christians vote Republican because they have "our" values. That is so much BS.

These words will step on toes. They're meant to be. I speak of this political season where hate is the only thing that seems to be spewed. I do not take sides. Neither makes me happy. But as Christians, we are not called to join in the hate mongering of one candidate or the other, our call is to pray that the right one will be elected. Hate has never been called to be a weapon we use, our weapon is to love, to be obedient, to stand as one as the body of Christ. Please, let's stop taking sides and work for what must be done.

To close your eyes or question why,
To accept what's wrong for what is right.
To think your actions matter little in time,
Is to kiss the future goodbye.

God bless America is now a lie,
Our moral decay changed God's mind.
Why should He bless,
When how we live is not right.
When so many Christians compromise.

Politicians one and all,
Cry belief for it is a draw,
They know Christians
Think one of their own
Will bring the country back.
But often what they spew is hate,
Blaming others for our state.

True, there are others to blame
But to look at us is to see the same;
Complacency has become our life,
While around us our enemy grows.
We bemoan the state of life
And then do nothing to make it right,
Is to knowingly turn your back
On what God's called us to do.

So where do you draw the line
When you parse the Bible to what you like?
When compromise rules the day,
In the end, your faith's a lie.
So tell me,
What does God Bless?

Back once again. As I write this, I am thinking of how much of a struggle it is just to do this. I am tired constantly. I can easily sleep 12 to 14 hours a day. Physical activity has become nearly non-existent, and I continue to have to deal with pain.

I am currently on Zytiga with Prednisone. I started it back at the end of April. My oncologist decided Xtandi had run its course when my PSA reached 8.7 and a bone/CT scan showed new mets in my neck and left tibia. The Xtandi was successful in treating me since November 2014. But I should note that I also received Xofigo from April to September (6 monthly doses). I am not sure if my oncologist gave me the Xofigo to help me deal with the pain or if he thought Xtandi and Xofigo would work well together in battling my cancer.

Well, the Xofigo never helped the pain but my cancer did not spread at all in 2015. But Xofigo left me with a lot of nasty side effects, the worse one being a lost of appetite. I dropped from 207 lb to 155 lb which is my current weight. I did not like Xofigo for the simple reason that it was a radioactive substance that I was allowing to be put in my body. If offered it again, knowing what I know now, I would decline. But that is me. I am not telling anyone who reads this not to try it. That will be your decision.

The Zytiga has added to the fatigue greatly. It also caused me to have an extremely dry mouth. Maybe the Prednisone is the cause. It doesn't matter, I just have to deal with it. My taste for food is way off. Foods I love, like pizza and fried chicken I cannot eat because they taste too salty and will cause my mouth to feel like it has sores in it. And I have this intense desire for sweets. It developed out of my dry mouth. I found myself having panic attacks at night due to not having enough saliva to swallow which in turn made me struggle to breathe. My solution was to suck on hard candy and add Ativan to my nightly Seroquel. I tried Biotene and it does work but only for a while then I have to wake and get more of the gel. With candy, I would put it between my cheek and teeth and would sleep that way. I don't recommend it but you do what you have to do.

It scares my wife to see with this craving for sweets. We both know that it could cause the cancer to grow. It's just another battle I must fight.

I have made a decision just recently that has been one I have been fearing for several months. I have decided I will restrict my driving to only going to nearby stores (2 miles) "if I feel I am safe to drive". That means my driving is nearly over. It is my fatigue that has brought me to make this decision. I can feel okay when I start out on a drive but I will quickly tire due to having to deal with traffic. I will find myself shaking my head, even slapping my face to keep myself focused. And I will want to sleep at red lights. It's just not worth taking the chance. If I was in an accident, even if it was the other person's fault, when it is found out I'm on Fentanyl and oxycodone, I will be the one with a lawsuit against them.

All of this has made my depression deepen. I go weekly to a therapist and I will be seeing my psychiatrist next week. But what can he do? Add more drugs to my already large supply? It sucks.

Thank God, I have a good wife to stand beside me during this time. And I am so thankful I have a large number of friends from my church who are willing to take me where I need to go or just come by and sit with me.

Well enough. I once again will end this with a poem. It is preceded by an explanation of how it came about. If it sounds like it was written before today, that is true. I post my poems on my Facebook page and always provide a foreword. If you care to befriend me, I am http://facebook.com/james.rushton.904

While on our road trip, we stopped for several days at my cousins house. Her husband had died just a few months earlier of lung cancer and one evening she told me that the last words he spoke were, "I'm invisible". For some reason this really shook me up, most likely because I too am on a cancer journey and lately have been battling with my own frailty, my own coming death. The words have gone round and around in my head since that day.
Today, I take those words and add an explanation to them.

I am Invisible

I am invisible,
The outward has met the inward
And have become the same.
I am an unseen,
A reflection no mirror can hold.
I am a human given to God
Where my reflection has become invisible.
I have become an instance
Through whom God touches the world.
I am His son by His Son.
I am His reflection
Where what is seen is not me.
I am invisible.

God's blessings to all.

It's been nearly two months since I last posted and a lot has happened. Let us first tackle my PSA.

Back in May, my PSA has risen to 8.70 so my oncologist decided that Xtandi had run its course and it was time to put me on Zytiga. I had no issue with him doing so. He said that because I had such a good response to Xtandi, Zytiga would be a breeze. It hasn't been but I am getting ahead of the story. This change of medications was done prior to my wife and I taking a 6 week road trip. One side effect that began almost as soon as I started it was a very dry mouth which only candy could provide long time relief. I must say I did not like eating candy while sleeping but that is what I was doing. I continued to battle with having no appetite. I would eat a morning, noon, and dinner but I did not gain weight.

On June 22nd, I had another PSA test and it had risen to 13.77. This was a 5.01 increase. The oncologist fluffed it off by saying Zytiga will give a "bump" before it starts to work. That didn't set well with me for in my reading, the bump comes after you have been on it for awhile, then you may see a high. He then scheduled me out two months which is the first time he had done that.

On July 20th, my PSA rose to 18.12, a jump of 4.4. It has doubled since I started Zytiga. Still I decided to wait one more month before deciding we needed to talk.

On August 20th, it had rose to 21.47, the highest it has been since I was initially diagnosed. I called the office and told his nurse of my PSA and my concern. He scheduled a new CT/Bone scan be done before our appointment on September 7th.

Yesterday, I had the bone/CT scan I just picked up the reports today on both scans.

First the good news, the CT scan was clear, I have no soft metastases. The bone scan is a whole different matter. I will just type what the report says;

Skull: Negative

Spine: Focus of uptake in the left mid cervical spine. Few new foci of faintly increased uptake in the cervical spine. Increase in number of multiple thoracolumbar foci of increased uptake.

Ribs/Thorax: Increase in number of foci of increased uptake in the ribs bilaterally. New focus of increased uptake in the right scapula. Interval increase in uptake in the left glenoid.

Pelvis/Hips: New foci of increased uptake in the bony pelvis, most pronounced in the acetabular regions and iliac bones.

Extremities: Foci of increased uptake in the proximal diaphyseal regions of the femurs have increase in intensity since the prior study. New focus of increased uptake in the mid to distal left femoral diaphysis. Similar foci of uptake in the right foot, likely degenerative/ postraumatic.

Additional findings: Mild urinary contamination.

Wow! That is a lot! It is much worse than I expected even though I saw the scan yesterday and could easily tell it had spread. The more I read the report and come to understand what each word used in it means, I feel I am an serious accident about to happen.

Honestly I don't know what to make of it. I knew my cancer was growing simply by the increase in pain. And the steady increase in the PSA backed me up.

Part of me is really angry at my oncologist for saying the first PSA increase was just a "bump" and then scheduling two months out.

And a part of me is angry with myself for not pushing the matter more. I purposely allowed two more PSA tests so to show him this was not some "bump". I think I should have pushed the issue more. But that is the past.

Thursday, Debbie and I will be going to his office. The discussion is going to be very interesting.

On a different note, on Sunday August 28th, my daughter-in-law Brandy died of Breast cancer. She put up one hell of a battle, doing far more chemo with the hope that one of them just might give her the healing needed so she could see her children grow up. She was 37. Her children ages are from 5 years to 13 years. As I sat there in front of her bed watching her labored breathing it had me thinking of my own demise. See, she was unconscious due to the pain from her bone mets.

With me having so many that they stopped counting, how will I deal with the pain? I have already decided I will not take as many treatments as she did. When the time comes when the pain from the treatments steals my quality of life, I will quit the drugs. I hope to deal with an awareness of what is going on around me.

I no longer drive. With the increase of my Fentanyl patch to 100mcg, it is just too much of a danger for me to drive especially since I still must take additional pain medication to get through the day.

Well enough for now. I have run on a good bit.

I will leave you with two poems written for my daughter-in-law and how hard it is dealing with the aftermath.

Days to Night
Further heed from day to night,
The circular coming of death and life,
The fearful thoughts of what might be,
The promised life of those who believe.

Still for most it is a painful sight,
For love is sharp and cuts the heart,
For the one whose love was of your life,
To turn your head as tears do fall,
The death seems to end it all.

Oh where to turn with grief so sharp
When life and death is yours to share,
The passing of the one so loved,
The spirit released to fly away,
A memory which from day to day
Will change as viewed in different ways,
A smile will come with sadness too
To measure deep this love so true
As days go by into the night.

Your Spirit Calls Me
The Lord says to me,
Come let us journey into the deep,
Past the place where your faith began.
Down the road where My Word became truth,

When you knew I would never leave you.
Now you understand,
I was more than you could comprehend.
And that is fine.
I've claimed you as mine.

My Spirit calls to you,
Come let us journey into the deep,
Lay aside your fears,
Your struggles are done.
The battle you've been in,
It has been won.
It's time to journey on.

Relax, breath deep,
Set your spirit free,
I am here for you to see.
Close your eyes,
The time has come
For you to journey home.

You have done well
My good and faithful friend,
Now heed the call,
The true journey has just begun,
Come walk with Me into the deep.

It's been less that a month since my last entry but much has changed. My current PSA level is now 27.19, up from 21.47 on August 20th.

I had my appointment with my oncologist on September 8th and he agreed with me that the Zytiga had not worked at all. DUH! I am angry with him because when I had my PSA tested after my road trip, it had jumped to 13.77, up from 8.7 but he considered it just a "bump", which he said was not unusual. That he scheduled me out two months also angered me but I let it slide. So I am angry with myself for letting him do that.

So I go to his office and at the time the reading was 21.47. I had had both a bone and CT scan the week before so I knew the results before he even opened his mouth. But he did not go into detail on the bone scan, only to say it was worse. I agreed with him and replied that I had seen both the Bone and CT scan and the reports which surprised him. I told him I had copies of all my scans going back to the time I was initially diagnosed stage 4. I told him I had all my records since then. He responded back that most men do not do that. It didn't matter what other men did, when my oncologist is not giving me a detailed report, I feel I have to do it myself. I've gotten a little pissed off at him but at this late stage in my cancer, trying to find another one who can give me a different option in treatment other than Taxotere would to be hard to find.

To be true, I have been confident in him until that last treatment. His giving of all the newest treatments first, including the combining of Xtanda and Xofigo, has given me an nearly 4 years of life since my diagnosis of stage 4 Prostate cancer which was quite extensive when first found. Many men would be unhappy with those results but I wanted someone who would think outside the box on how they gave the treatments, I needed to get my PSA down to zero or below. My oncologist was only able to get it down to 2.08 in August of 2015 but he did keep my cancer from spreading the whole of 2015. With the end of Xofigo, my PSA started a slow rise and still has not stopped.

When Zytiga was started at the end of April, my oncologist felt sure I would have a good response to it since I had with Xtandi. I trusted his opinion so we started our six week road trip. But as I as soon the roadtrip started, I began to have bad side effects and my pain level increase, I began to think it was not working. So when at the first meeting after the trip and I found my PSA was 13.77, I was not really surprised. My oncologist was not concerned, saying it was not unusual for it to rise then to go down. He called it a "bump". When mu PSA jumped again the next month, I thought to myself, okay maybe this is just part of the "bump" that he had talked about and I did not raise the red flag. When my pain became worse and he sent me for a MRI and to a pain specialist, he should have called me in then. He didn't. When my PSA hit 21.47, I called his nurse and told her how high it was and she immediately said she would talk to Alemany. I asked her if he had looked at the MRI, then answered my own question with a "probably not" and she did not say I was wrong. When the report of the MRI listed my mets as innumerable, I did research on what bone mets looked like on MRIs and with that knowledge looked at the scan. I concluded that all my lumbar vertebrae plus Thoracic vertebrae 12 and 13 had cancer to some degree.

My bone/CT scan was moved up from October to the week prior my appointment so we would have something to look at. If I had not called, this would not have happened. Let this be a warning to those who read this, you are your own advocate. Don't depend on the doctor doing everything right. He sees lots of patients.

I took my first treatment of Taxotere last Friday, September 16th and I have been miserable with pain ever since. Lots of pain. More pain than I have ever been in excluding the time when my urologist botched my radical prostectomony and caused a bowel blockage. Now that pain was unbelievable. I've been nauseous, fatigued, plagued with forgetfulness, angry. This Taxotere is just kicking my butt big time. It had me crying Sunday night and I hate doing that.

My next treatment is still more than two weeks away and to have already experienced so many side effects, it has me fearing the next treatment more than I did the first.

The only thing that helps distract me from the pain is writing as you can tell by this long post. And if you have been paying attention to my posts you know I write Christian poetry. Thank God, I have been able to carry that on. I am also constructing a blog, adding enough entries to it to hopefully keeps a persons attention long enough that they will want to come back. Any way here are two of my latest poems, both written this week.

The Wings of God

Arise oh my spirit wings,
To confront the angry clouds,
The ones that speak of pain and woe,
The ones I wish not to pass through.

I try to smile to hide the storminess,
The pain that tears my thoughts,
But the clouds are so dark with fearfulness,
I strive to let them go.

Yet as I sail on spirit wings,
The dark clouds loom large and wide,
And though I try to pass them by,
I know no other way.

As stormy winds tear at my wings,
With hope to bring me down,
My wings are changed
By the turn of the feathers,
So I rise above the stormy weather
Until the Son is seen.

Oh fearful are the clouds so dark,
By self I cannot weather,
But when my wings
Are of God's feather,
I can sail and fly away.

Sitting down to waste my day and heard a reference to Bob Dylan's "All Along the Watchtower" on a documentary I am watching about Steve Jobs. And in my mind, the words "The Watchtower Stands" come to mind. And so I take what has been given and finish what it means.

The Watchtower Stands

Upon a hill, the watchtower stands
And on the ramparts is one man,
Staring out upon the sands,
Where no man walks upon the land.

The watchtower stands
While so all alone,
For those who cared are now gone,
All due to the passing of time,
When love was lost, the green of life,
When man fought amid the strife,
To claim the tower upon the hill,
That still stands amid the sand,
The battles of man have cleared the land.

Yet in the tower is one man,
Whose eyes look beyond the sand,
To a time when the love of man,
Tilled the soil and planted grain,
Seeds through which love was gained,
For the sight of man was on another,
And treated him as his brother.

But there came a hate, a cry for more,
And man turned and started war,
And on it waged day by day,
The fertile ground was thrown away,
The evil that became the sand,
Began to spread and cover the land.

Yet even as the sand hills grew,
The anger swelled,
Hands pointing at you,
For you were the cause of all this,
The barren land, the loss of love,
Until now when only one man stands,
Upon the watchtower, a relic of when
There was love for each man.

In this man, his heart breaks,
Love is gone, still he awaits,
The time when man will stop the sand,
Reach out his hand to fellow man,
Discard his sword to till the land,
Because through the love of his God
Who sent his Son to break the hate,
To restore the love that He gave,
To a time when the love of man,
Will till the soil and plant grain,
Seeds through which love will restore,
The sight of man for one another,
And treat him as his brother.

Three days ago, I have my third treatment with Taxotere. I will say with each treatment, it has been a bit better to bear. The first treatment took my 2 1/2 weeks to recover which left no time before the second one. For this treatment, recovery only took a week. Each of these times, the biggest side-effect for me was extreme pain. As I already have extensive bone mets, taking Taxotere and Neulasta was like pouring gas on a fire. OMG, did I ever hurt. My Fentanyl went from 100 to 150. My first PSA was after my treatment and it has risen only slightly, .22, from 27.19 to 27.41. With this third treatment, they tested my PSA and it has jumped to 30.90. For those who have read my posts, for me this is a big jump, one I just cannot ignore. I will have one more treatment and PSA test before I see my oncologist on December 1st. If it has risen again, what am I to do? Just keep on going when it looks obvious it is not working? Or should I something else. The thing is, there is really only one other chemo to try and that is Jevtana and with all I have had to deal with with the Taxotere, I do not feel like trying Jevtana.

I am at the point of saying enough. Just keep my pain under control and I will walk out the remainder of my life with dignity. My deciding not to take Jevtana does not make me a loser and if anyone wants to argue that point, I will tell them to step into my body and I will leave them alone for around 3 days which is the cycle of my Fentanyl patches. I'll let it wear off slightly before putting on another and see him climb the walls in total agony for a few moments before giving him a couple of strong pain pills to dull his pain. I've grown sick of the whole damn game of watching my insurance spend unbelievable amounts of money for drugs that may or may not work and whose side effects can greatly vary.

As I say, I have grown tired. This poem is good evidence of how it has become with dealing my having to always take pain meds.

Clouds and Starlight

I sit in my chair in deep despair,
There is no purpose for my life.
What I seek to speak or write
Are words that hide what's now a lie,
For hope does not reside in my heart.
Sometimes the anger that I feel,
I find it very hard to quell,
For no answers comes when I pray,
I'm left alone in my distress.
Please hear my prayer, Oh righteous God,
By whose Will has my life been planned,
Surely, You can change the path
On which my feet now walk.

I close my eyes and hang my head,
This pain, I cannot deal with it.
Pills and patches, take what may,
Anything to contain the pain.
And as the drug takes a hold,
I find myself taking flight
Into the dark and starry night
Where I hide amid starlight.
For a moment my heart is light,
As I'm carried along by the clouds of night
I float along between the stars
To a place where I feel You are.
Then the moments gone
And I am once again
Wanting to know why I'm in pain.

No answer comes that I can hear,
Though my spirit tells me You are near.
But as my pain again grows and grows,
I know the path that I must take,
And as the meds again take a hold,
I float along on the clouds of night,
To the place I know where You are near,
Where my heart is light amid starlight.

I have had two more Taxotere treatments since my last entry. The fifth and sixth together dropped my PSA by 1.16, down to 29.74 from 30.90. I personally did not think it was enough to say the Taxotere was working. I had read enough of Taxotere that if it did not drop dramatically on the first or second treatment, then the treatment was not going to work for very long.

That was confirmed yesterday when I found out my PSA has risen into 32.77. I shocked both me and my wife. I just sat at the computer looking at the count for a long time. My wife just about panicked. Since I have been saying that I do not plan on going any further on treatment.

Next Monday I go for another bone scan and a CT scan of my brain, chest, and pelvis. What the results of these tests show will be determine if I continue to go on with the chemo or not. I have looked at Jevtana more times than I can count and always come back to the fact that I may tolerate having it given but if it is going to be like the Taxotere and take me two weeks to get over most of the symptoms then do it all over again, I have to think hard on why I should go on.

My health is still fairly well in regards that I am still capable of going places and doing little things like what my wife and did at the beginning of December when we went to Clearwater FL for five days. While there I went out on a party fishing boat and though I didn't catch anything big, I did have fun catching lots of little ones. I did pay for it the next day as my back really gave me hell but it was well worth it and I would do it again in a minute if I can.

If I keep taking treatments will I be able to do these things? I surprised my oncologist when I told him I was getting tired of the treatments. I mentioned something to the effect that I was not losing weight, my skin was not sallow, basically I was not on death's door. He asked if I was depressed and I said no. I take medication for my bi-polar and it has kept me from getting depressed.

I will see him once again in early January and I think I will ask him what he would be doing in my situation. I wonder if he was thinking money when I said I was thinking of quiting treatment. Honestly I don't think so. His treatment of me has been as best as I tell okay. But I have run out of treatments except Jevtana and older treatments. There may be some clinical trials but I want to go through treatments until I am on death's door.

Well, until next month.

I received the results of my CT/Bone scans from December 19th. The CT scans were clear, meaning there were no soft metathesis which did not surprise me. All my CT scans have been clear since I was staged stage 4. Sometimes it confuses me to have so many bone mets but no soft mets. But I am thankful it is so.
I was pleasantly surprised with the results of the bone scan. I was prepared for it to be really bad but it wasn't. Here is what was found.

Report
EXAM: NUCLEAR MEDICINE WHOLE BODY BONE SCAN

INDICATION: Prostate cancer. Assess for osseous metastasis.

COMPARISON: Bone scan dated 9/2/2016 and 4/8/2016. CT chest, abdomen and pelvis dated 12/19/2016.

TECHNIQUE: Total body images were obtained several hours following the intravenous administration of 23 mCi of Tc-99m MDP.

FINDINGS:
SKULL: Negative.

SPINE: Multiple foci of increased uptake in the cervical, thoracic, and lumbar spine. New focus of mildly increased uptake in the right aspect of
the mid cervical spine. Interval increased uptake in the left aspect of the upper thoracic spine. Interval mildly increased uptake in the lower
thoracic spine. Interval decreased uptake in the right aspect of the mid lumbar spine.

RIBS/THORAX: Foci of increased uptake in multiple ribs bilaterally. Interval mild decrease in uptake in the foci posteriorly near the thoracic
spine. Interval slight decrease uptake in the left fourth rib focus anteriorly.

PELVIS/HIPS: Multiple foci of increased uptake in the bony pelvis. Slight decrease in focal uptake in the right supra-acetabular region.

EXTREMITIES: Similar foci of increased uptake in the left coracoid/glenoid and bilateral proximal femurs. Similar focus of mildly increased uptake
in the proximal right humerus. Foci of increased uptake in the right foot are likely degenerative.

ADDITIONAL FINDINGS: None.

IMPRESSION: New focus of mildly increased uptake in the right aspect of the cervical spine. Some lesions demonstrate increased or decreased uptake while most lesions demonstrate similar uptake. Findings again most consistent with widespread osteoblastic metastatic disease.

At first glance, it is not a very good report. But what I keyed on was the words "mildly" and "decrease". The word "decrease" has not been used in a report since September of 2013 so to have it used now is especially hopeful considering how my PSA has gone.

When I started Taxotere, my PSA was 27.41, it went as high as 32.77 and is currently 30.03. The increase varied from as much as 5.36 to the current 2.74. My PSA has never went below what it was when I started chemo. So for me to have results that used words like "mild" and "decrease" is hopeful.

I start my next chemo on January 3rd, not the best way to start a new year. I should have another PSA test done so I will once again have a number to worry over. I wish I could just ignore them but I cannot.

Powerlessness

Crossing through the mental lane,
Feeling scared, feeling ashamed,
Where what you thought you think to blame,
Where hopefulness is hopelessness;
Your thoughts you thought could make a change,
But now you see it for what it is,
It reveals your own powerlessness.

Fear is a driving force,
Reaction to it changes course,
You cannot stop what is to come.
Once you thought you saw the path;
One in which you thought you were in charge
But now you see it for what it is,
It reveals your own powerlessness.

A rivers power cannot be seen,
The swirls and eddies hide its strength,
To step into is to be swept away
Through waters deep, waters grey,
The strength you thought you had inside
Gets swept along as you slowly die,
Looking back what you thought of you
Was never ever what was truly true.
Where once you thought you were in charge
Reveals itself for what it is,
Reveals you were powerless.

In faith we want to think we are,
Still the person who is in charge,
We pray the prayers, we play the game,
Saying words we hope brings change.
But still we feel the downward pull,
The realization we cannot save our soul.
The river of death still draws us down
And here as the current speeds
We seek a savior for our soul needs,
For it's here we see we're powerless,
To cross the river with our soul intact,
We need a savior to do that.

My PSA dropped a little over 2 points but it was not enough for my oncologist to inform me on January 9th that the Taxotere treatment had failed. Even though I had tried to put a positive spin on the last bone scan, I knew it wasn't. So when my oncologist told my wife and I that it had failed, I was not surprised. But I was surprised when he said he had seen a lymph node in my pelvic region he thought was cancerous but still too small to take a biopsy. I have for a long time wondered how it is that I can have extensive bone mets and nothing in the soft tissue, how I have gone through nearly every treatment available and not have any cancerous soft tissue. Is this lymph node the beginning of the cancer spreading now to my soft tissue. Only another test would reveal that answer.

Unfortunately my wife was surprised the failue of the Taxotere and was not prepared to hear the news. It was especially hard on her because we had already talked about my decision to no longer take any more treatments once the Taxotere failed. I know many would consider my decision to stop as doing so too soon but I am a realist. I know the next drug in line, Jevtana, is just a slightly different take on Taxotere, having the same chemical base of Taxane. I also knew the treatments coming afterward would be the older chemo treatments.

Taxotere has been very hard to handle. I should be more specific, the Neulasta after the Taxotere has been hard on me. Actually it's been hell to take. It didn't matter that they reduced the dose, it took two plus weeks to get over it completely which left just a few decent days before starting the process all over again. And even in those "decent" day, I must deal with pain. So to say okay to Jevtana when I know it would be just as hard if not harder on me has my mind rebelling against the prospect.

Even so, my decision has not been set in stone. My oncologist told me to take a month long holiday from chemo and when I come back on February 20th, I can make my final decision then.

My wife and I have already spoke to a hospice and we have had a person come out to pitch their cremation package. Neither really met our desires and we will be looking further. Do this feels so morbid when you know you are planning this for yourself but then it has a calming effect in knowing this will have been planned out before I die.

Well enough for now, I am quite tired which is a normal state for me these days. I leave whoever care to read my posts with my latest poem. Writing has become very difficult but still brings pleasure when something I write I feel is decent.

Our Life String
Written by James Craig Rushton

I have lived a life of happenstance,
Unwary of the cost of chance,
Where age was just of thought of mind
Uncaring of the passing time,
To know the truth yet to walk as may
Until I woke and time had passed away.

This life of mine was a broken string,
Began at birth, it became frayed ends;
I felt a sadness of what might have been,
When I cast the truth into the wind
And walked a path of no direction
For a fleeting time of enjoyment.

Yet grace was mine when so desired
Though my desire came when I'd grown old,
For God's love does not demand a time
On our life string to confess our sins
Unless we wait until life has ended
And found ourselves with no more chances.

So sweet it feels when our heart's cleansed,
By a grace whose purchase we could not pay,
By a God who gave His only Son,
So our life string, it would be mend,
For our life string, God did begin
And by His will it will end
The day we step into heaven.

My last visit to my oncologist was February 20, 2017. It started off different from any before it in that the first thing that happened was a nurse came in with a kit to draw blood. I asked her what it was for and she said it was to do a DNA test. I thought, "why not", but after she left the room, I looked at my wife and asked why they were doing this so late in my cancer treatment. The only test I could think of where they tested your DNA was one where your DNA is checked to see if you are a good candidate for Zytiga and Xtandi.

Anyway when the returned with papers to signed to allow for the time, I told I was signing until I had more information. When my oncologist said they were looking to see if I had a problem with my BRCA1/2 or what is called a ATM-mutated disease. It still did not make sense to me and I told him of the only test I was familiar with which he said this was not it. Do not ask me why but I went ahead and signed the papers for the blood test though I still had little understanding of what the test was for.

I then told him that I still did not want to take any more chemo. I asked him how long did I have if I kept on taking Lupron and he said around a year. I then asked if I did not take Lupron and he said my PSA would soar. I took that to mean I'd only have a few months.

He then asked me if I was open to being in a clinical trial and this is where the blood came in. They were looking for candidates would had BRCA1/2 mutant and if so I would be getting drug called Lynparza. Currently this drug is approved for women who have breast and/or ovarian cancer. He said if I was willing they would have to do a biopsy of my cancer, getting it most probably from my lymph node. This was something I could just immediately say yes. I wanted to do my research before I did anything.

So we left and my wife was angry. She said, "Well I guess you've already decided to do the clinical trial". I said no but did want to do research on it. I'm not going to spend a long time trying to explain how this drug works. If you are interested google " Lynparza and prostate cancer" and you'll find plenty. Some men would think their wife's would be ecstatic about having another treatment for their husband's to try but mine has seen me go through all the various side effects the drugs I have taken have taken and she does not want to see me hurt anymore especially for her. So at this point, we are still in agreement in saying "no more chemo".

I received my latest PSA reading last week. It is 42.41. That is just 6.2 points from my highest reading which was when it was found my cancer had gone stage 4. I will probably hit that mark next month. It is a bit scary to know I will soon be going into unknown territory when it comes to my cancer and my PSA number.

In the meantime, my wife and I have planned to hurry up to see family, I still have a few things to do on bucket list, all must be able to be done cheaply (damn!).

But I will say this, if you had seen my first bone scan, you'd have said "this dude has only a short time to live". It's been five years. Yes, there have been some really hard times but there have been many blessings. I can be angry for this "happening to me" but I choose to be thankful. The God I serve has allowed me to do many things during these five years I would probably not have done if I had not had it. I am grateful.

I will close with a couple of poems I've written over the last month. I hope you enjoy them.

And So Goes Life
Written by James Craig Rushton

Changes that were meant to be,
Changes that caused my heart to sing.
Changes that never came.
Changes that angered me,
Changes that made me me.

Work, to work, everyday,
Hope to make enough to play.
Yet it never feels it is enough,
The future is always calling me,
With changes I hope to see;
And changes I hope I'll never see.

To love, oh to say I love,
Only to find how difficult,
For when love comes my way,
I find my feelings always change.

And so it goes with children gone,
The joy of them went along,
The house has now changed its ways,
With an emptiness you try to fill with things,
Yet the changes still hang of yesterday.

I awoke to changes that were not to be,
I saw a stranger in the mirror today,
The time so still when I were young,
Now bounds along as on a young steed,
I stand in the dust as it fades away.
The changes that were meant to be
Are some that were oh so sweet
And some that brought me pain;
Yet if in the end, you find that you can smile,
You've lived a life that was worthwhile.

A Child in Me
By James Craig Rushton

I woke to birds sweet singing,
It's gentle sound was calling me,
And with its sound, I took wing,
To sail above the surrounding trees,
Calling, calling, do you see me.

I woke to sound, wind in the trees,
The mating of limbs as the wind did play,
The wind calls to when I a child,
Stretched out my arms and laughed aloud,
It's touch on cheek, in tugging hair,
It made me smile as when a child.

I woke to feel the sun on my head,
The night was gone and I was alone
In the comfort of my warmed bed.
The sun stretched shadows of adult things
Into twisted memories of childhood toys,
I smiled in this simple joy,
Remembrances of when I was a child.

I woke this morning as an adult,
The birds did sing as the wind did blow,
The sun brightened all that I could see.
And my heart sang to the bird's tune,
My face was brightened by sun and wind
Though my wrinkled smile told I've grown old,
Inside I find I can still run free
For there is still a child in me.

Here it is the middle of May and I am I am at my son's house. As with my visit to my visit to my daughter, the purpose is to say goodbye to both my children and grandchildren.

I have stood firm in my decision not to take anymore chemo treatments. Without the chemo treatments, my PSA has jumped dramatically. I know for some, a PSA of 80.90 is not considered that high but I know myself and being a man where a PSA of 4 could cause my cancer to spread so for it to be 80.90 is quite serious. In my last visit to my oncologist, he told me that if I was not going to take any treatments, I needed to go on hospice. The word hospice was not new. My wife and I had already discussed it but when my oncologist said the word, it took on a differnt feel.
When I return May 17th, I will get another bone and CT scans. They will tell me more than anything else where my cancer stands. I know it has progressed but where I am not sure. Is it still just in my bones or has it spread. I have developed problems with my stomach which makes it difficult to eat. Of all the things I have lost to this cancer, the inability to enjoy eats is the greatest.

Some may think that with my decision to not fight cancer any longer that I am a coward who is giving up to soon, who fears the pain the treatments cause. To the latter, I agree, I came to fear the treatments. They caused me much pain and when the Taxotere failed four months after its start, I could not see taking another as being any more effective. As for being a coward, I will disagree with you intently. The decision to stop takes a certain kind of courage.

I can tell you that hardly a day goes past that I question my decision but the reason I question is due to fear, not the idea that a new chemo is going to give me 'x' number of days. Those days when panic sets in, my wife reminds me of why I chose not to seek anymore treatments and also reminds me of the pain she also has suffered as she has seen me battle this cancer.

So to consider me a coward is an insult to me.

As with many of my posts I will post here another though it is not one of a positive note but on of the fear and depression that cancer brings upon youl It is simply called depression.

Depression

Where goes the day when darkness hides the sun?
Where is hope when there is no purpose?
Why fight when you know you cannot win
When death comes no matter what.
I find myself longing for the day, the night,
The cry of my soul cannot be heard,
For there is no one to listen.
Prayers, what are they?
How is it the words of a thousand men
Cannot break the silence of God.

Why smile?
Whose lie am I speaking?
There is no hope,
Only this shrinking skeleton of a man
Blown by the wind.
I'm no longer tied to the ground
But I am free to fly away.

Oh, where shall I go?
Where be my destination?
Heaven? Hell?
An emptiness that has no name?
Where goes my soul when I give up?
Is it the same as suicide
If I choose to lay this body down?
Please don't ask me to pick up;
It is of no worth.
It is of less worth than the coin found in the street.

God, take me this night, let me fly away.
I do not care to where, I am tired of this fight.
This a a fight I did not pick, a fight I did not start,
A fight where I do not want to hurt myself or the ones I love.
Do they see that my intention was never to hurt?

But that is not true, I wish the end so to cause hurt,
To show the pain I've felt, to show how tired I have become.
But I will not do that, It is just anger in my mind,
Thoughts I care not to think.
Oh the frustration I live.
A litany of petty arguments that make no difference.
I only want to lie down and sleep.
Do not wake me, do not call my name.
Close the door and breathe a sigh of relief.

My battle is over, a new life begins.
My name will quickly fade
And as with most men,
My memory is be no more.
I will have become as the wind,
Scattered ashes upon waters
That never stop but moves continually.
And so I will be free to travel to all the places I wished to see.
I will be free.

I went to see my oncologist and for the third time he offered me Jevtana and I must say I thought about it longer this time. The reason was due to the fact that I had seen my last bone scan and description. First, my PSA had gone up from 59.07 to 80.09.

Then the description of the bone scan was terrible.

EXAM: NUCLEAR MEDICINE WHOLE BODY BONE SCAN

INDICATION: Prostate cancer.

COMPARISON: CT scan chest, abdomen and pelvis dated 5/19/2017. Bone scan dated 12/19/2016.

TECHNIQUE: Total body images were obtained several hours following the intravenous administration of 27 mCi of Tc-99m MDP.

FINDINGS:

SKULL: There is new focal uptake within the maxilla on the right.

SPINE: There is increasing multifocal uptake throughout the cervical, thoracic and lumbosacral spine.

RIBS/THORAX: There are increasing bilateral rib lesions as well as increasing uptake throughout the sternum.

PELVIS/HIPS: There has been progression of the bilateral pelvic lesions.

EXTREMITIES: There are new and increasing lesions within the proximal long bones bilaterally there is focal uptake within the scapula bilaterally.

ADDITIONAL FINDINGS: There is mild urinary contamination.

IMPRESSION:
There has been progression of the previously noted osteoblastic metastatic disease.

If could paste the image of my bone scan, I would.

Now back to my story with my oncologist. Hw said Jevtane might keep my cancer at bay. He then said that I had to take Jevtana before I could any other type of chemo.

That was the deciding factor. The pain I had endured with Taxotere made say me say no. Even though he said Jevtana was diffenent from Taxotere, I said no.

Last week I signed up for Hospice. I don't feel I am ready but at this point in my life, I don't know what else to do.

I am not quite sure why I am writing today except I had a person compliment me on my poems and so I pick laptop and type.

First I will update you on one of my worst ailments. It is my stomach. Since my last few doses of Xofigo, my stomach has become my worst enemies. I can hardly eat. So far I have dropped 60 pounds. It's not that I not hungry, I am but when I sit down to eat, I only get a few bites eaten and my stomach tells me no more. And even then I will suffer in some way. I can't burp. Doesn't sound that serious. But think about all the air you inhale as you eat that has no way to escape. Tums! Roll from side to side. Have someone sqeeze you. I will start to panic which brings out the anxiety pills. It will finally end with me finally burping or by throwing up everything on my stomach. Constipation is a constant friend. I have found a concoction that works for me but once it starts, it is diarrehia and I must take something to stop it. Oh what fun! This, more than anything else, takes the joy out of my day. There have been many days where I do not care to eat because I know what it will cause. Fruit, raw vegtables, protein shakes, and ice cream, these I can eat without causing immediate pain. I tell you, I have grown quite tired of this. Now to a different subject.

Hospice is a strange animal. Shortly after going on hospice, I was told I could no longer take Lupron, it bothered me because my oncologist had told me that once I was off it, my PSA would shoot up like a rocket. I guess I am celebrating an early fourth of July. God, what horrible humor.(smile) Then there is the fact that all my drugs will now come through them. I mean everything. The drugs I take for being bi-polar, here you go. And of course the ones for pain including a sizable amount of MORPHINE!

The day I signed up, I received two bags full of different drugs, many I had not ordered and did not plan to take. It really pissed me off. Then my wife said that this was standard treatment for those in hospice. She hazarded to guessed the packages were pre-packaged which made it easier on hospice.

But the Morphine was a kicker, a drug that came close to breaking down the wall I had worked so hard to build. Here I was with Fentanyl patches and hundreds of oxcodones and I did not abuse them. That is how I came to have so many oxys. I would just take the script, fill it, then add it to my growing pile. But Morphine was a different animal. The way it worked was different, coming on stronger and lasting longer. It kicked my addiction right where it hurt. And the nurse monitoring my pill intake did not care. My wife calls her, "Craig says he needs more, what should I do?" Give to him! Well okay. You're right, he is terminal and if it makes him feel better, why should I fight how much I give him.

Yea!!! Freedom to use as needed, actually as I wanted. And it was kicking my butt. My wife was dosing it to me but the bottle was right there in plain sight so what does it matter if I take a little more?

It matters when you're slurring your words, nodding off while trying to type, staggering as I tried to walk. As I said, it had beaten a hole in the wall I had built to keep me from abusing and I was going downhill fast. Thank God for my wife who keeps my drugs in a lock box. Managing your addiction is much easier if it is harder to get.

Now get this. The last visit from the nurse monitoring my meds told me if I crushed an oxycodone between two spoons, it would hit me faster. Nice nurse! Careful, hide your drugs! This nurse is dangerous and does not have your best intent in mind.

So hospice is a much different animal. I still wonder if it is the right time to go on it. But the question arises that if my oncologist says he can no longer see me since I am no longer taking chemo, where do I go for my meds?

On my last visit to my oncologist, he again asked me if I wanted to take Jevtana and again the answer was no. He then threw in this cleavet that I had to take Jevtana before I could take any other type of chemo. What the hell? Do you know how much Jevtana cost per dose? What I found on a medical paper was $7000.00. Even with help with the co-pay, I would be looking at a sizable bit of change. So goes our medical establishment. The expensive before the cheap.

Well enough of my rambling. I'll leave you as I often do, with a poem.

The Angel By My Side

Lying in my bed one night,
I felt an angel by my side.
I said to him, My days are short
And my death is nigh.
Tell me what heaven is like.
I've read of what heaven will be,
Even so, it's hard to believe.

The angel remained silent for a great while
But on his face was this gentle smile.
In my anxiousness I angrily said to him,
Why are you so silent,
Can you not feel the fear in my heart?
I do not understand, please give me an answer.
Time stretched for what felt an eternity,
Even so I was still confused until he touched my arm.

Suddenly I found myself in an unbelievable loving light,
All I had seen disappeared into the light.
I looked down at my hands,
They too were swallowed in light,
Then I felt as if I was spinning,
Spinning in a light so complete,
I found myself smile on the inside.
Then came the melody of a song,
A song I knew but had never sang,
I opened my mouth to join in the song
But found I had no mouth,
Yet I had the feeling that my spirit
had joined in the song.
Joy indescribable surged through me.

As I joined in praise, I began to understand why.
Words could not truly describe the love and joy I felt
Then slowly the light began to fade
And a great sadness filled my heart.
I had come to understand the silence of the angel,
His silence had hid words that could not describe
What I had seen.
One moment I would try to tie the words together
Only to find my words tumbled over each other
Leaving me as wordless as the angel by my side.

After what felt like an enternity,
I once again turned to the angel
But this time the angel took his arm from me,
Bent down and raised a robe glowing in light.
He laid it upon me and was gone.
Tears streamed down my face
As the darkness of the room returned.
I continued to lie in my bed in the dark,
But the darkness had changed,
I was no longer afraid,
Instead there was anticipation,
Whispering I said, "Soon my Lord, soon."

I am always surprised when I read a story here in Yana where the man has a PSA in the thousands and I suffer with one that just crossed the hundred barrier. It is now 105.60 and I am on hospice because I have decided to stop having chemo treatments. Back in January when my oncologist informed me that Taxotere had failed (not that it had worked at all), I told him I did not want to continue with taking chemo. It surprised him as there still are other chemo treatments I can take. But as I have said previously, I have researched the treatments I haven't taken and none give me much hope. When I say "not much hope", I am speaking as much about quality of life as extension of life. Taxotere was hell on me and if I am to continue on chemo, I must take Jevtana next which is just a different variant of Taxane. I wonder if this is true elsewhere, if this is another something required by Medicare.

And oh by the way, I have just been informed that I am being dropped from Medicare due the argument that I have been overpaid. The issue is not my fault and I have been trying to find a lawyer who would represent me on this. I felt I had sent in all the requirement needed to keep this active but obviously I didn't. This truly scares me. Thankfully I will be able to stay on hospice. Without Medicare I lose my income and I immediately go into financial crisis mode.

This tires me emotionally. Combined with my physical fatigue and pain, it brings on a depression that has me wishing for death. Concerning pain, hospice has found a combination of pain medications that has my pain level under control. I am still on the 150mcg Fentanyl but it is not combined with an extended acting Morphine pill I take every 8 hours. This combination has helped me not have to take liquid Morphine or Oxycodone for break through pain. For me that is just short of a miracle. Hospice has also helped with my stomach problems by putting me on a regimen of colace and Senna. Two pills of each both in the morning and at night. I has stopped the constipation though I still have at times diarrhea. And being able to eat is still a problem but t is getting better. I makes me laugh to realize it's taken hospice to figure out some of my ailments caused by taking various treatments.

For those who have read all my posts which have been many, I thought I would give a short list of what drugs I have taken since being diagnosed stage 4.

Casodex
Lupron
Provenge
DES
Xtandi
Xofigo
Zytiga
Taxotere

So I have gone through 8 treatments with Xtandi with Xofigo being the most effective. If you will notice, nearly all of the newest drugs I have taken. I find myself trying to be positive in my situation but I find it nearly impossible. I've looked at some clinical trials but so many require that I have not taken some of the drugs I already have.

Well enough. I will close as I have so many of my post with a poem.

To Stay and Go

Stay, stay, I hear the cry,
But I cannot in this long goodbye.
Time is moving and does not wait,
And time was never mine to keep.

Today, I wake with hope and thanks
Not that I been given another day;
But to speak for those who are as me,
People whose strength has ebbed away
From days that are full of pain
Who wish a life of lesser days,
People who have lost faith.

Yesterday I'd say "When times were good,
The joy, the love, the hopes I had",
And by doing so, I'd close the door
On the blessings this day can hold.
Forgive me Father for looking back
When clearly my walk is a forward path.

My hope of heaven is not misplaced,
To leave this world for that better place,
Where the pains I suffer day after day,
No longer follow me from place to place.

Stay, stay, but I must go,
We all are born to say goodbye,
Our moment here was to learn,
What is true love and what is hate,
For only then can we know man's fate,
And how great the love God has for me.

And this I have learned in my passing life,
The love that's found in His given grace.
As my time approaches as with all men,
My goal, my calling, is to say
"By grace I have finished my race."

James's e-mail address is: jcrushton55 AT gmail.com (replace "AT" with "@")

NOTE: James has not updated his story for more than 15 months, so you may not receive any response from him.