My Crystal Ball

I used to like to walk the straight and narrow line
                       I used to think that everything was fine

All alone and trapped in time
                        All alone and trapped in time

Sometimes I’d sit and gaze for days through sleepless dreams

Well, hello, there, Camden.  You startled me.  Let me turn down the music.

Say what.  Oh, you want to know what I was listening to.

Let me tell you, Camden, I was listening to the World’s Greatest Band…Styx!!

Now some people will tell you that Styx is not the Greatest Band.  They might be right.  Once upon a time, there was a group called the Beatles.  I heard Yoko Ono exterminated them.  That might not be a fair/accurate statement, but some people.

Anyway, Camden, if you want to win “Dead Man Trivia,” Styx is the answer that the judges should accept.

I do wish Tommy Shaw and Dennis DeYoung could work out their problems.  Maybe they should call Saul.  No, not Yoko…Saul.  I would love for the band to get back together.  I would go to that concert.

But, I guess we all have problems, Camden.  Yes, I have a few. 

I keep thinking that things will get better. That my timeline will be extended.  Well, that has not happened, and things have gotten worse.

I try to stay positive in the face of terrible news, but it has been challenging. That lack of positive information has kept me from writing an update.  No one wants to hear a woe is Kevin story.

One positive thing that has happened in the past year and a half is that I am finally off the opioids.  They have finally found a drug combo that has helped me with pain.  A very high daily dose of Gabapentin along with a muscle relaxer helps.  I am not pain-free but can function. 

They did not like me using opioids at work—something about driving and carrying a gun.

I went out by myself to an interview at a school one day.  One of the interstates was the fastest way to get there.  So off I went.

I got a call from a co-worker while I was driving telling me to be careful because it was reported that someone was going the wrong way on the interstate.

I told them that it was not just one person going the wrong way. From what I could see, dozens and dozens of drivers were all going the wrong way. 

They would not let me go out on my own after that.

Okay, maybe that is not entirely true, but they no longer let me drive a city vehicle before I retired, and most of my duties were limited to the office.

I drove my own car from time to time, but when you hit about 40 mph, the wind negates you sticking your head out the window making siren sounds.  Oh well.

Yes, I retired.  More about that another time.  So that is the positive news. 

The bad news is that Brutus has been growing faster and faster.  My doubling time is now 2.4 months.  Not a doubling time that is conducive to a long life.

My doctors keep asking me to go back on the poisons.  I keep saying no.

My urologist sarcastically asked me: “Are you going to wait until you have tumors all over your body?!”

I think he was being sarcastic.

That might not be word for word what he said, but it is what he meant.

He asked a valid question. 

I do want to live.  We might have a different idea of the meaning of living.

Hold on, Camden, let me turn up the music for a moment.

I wonder what tomorrow has in mind for me
          Or am I even in it’s mind at all
Perhaps I’ll get a chance to look ahead and see
       Soon as I find myself a crystal ball
      Soon as I find myself a crystal ball

Hey, that is what I need.  A Crystal Ball.

I need a crystal ball to tell me if the treatments I am being asked to do will help with my goal of seeing more tomorrows.   

Tell me, tell me where I’m going
I don’t know where I’ve been
Tell me, tell me, won’t you tell me
     And then tell me again
My heart is breaking, my body’s aching
     And I don’t know where to go
Tell me, tell me, won’t you tell me
    I’ve just got to know

Camden, the doctors don’t know the answer to many questions.  They cannot tell me what would be the best treatments, but they often have a preference.

They know the research. 

They know the theory. 

Patients know the reality.  Patients live that reality. 

Often the theory and reality clash.  That usually adversely affects your quality of life.

What the patient wants to have is the best quality of life possible. 

I have found that my quality of life suffers both on and off treatments. Each way, you do not feel well, but they are different.  I guess that is just cancer.  Duhhhh.  I figured that out right now.  I am brilliant.

When off treatments, I feel more pain.  When on treatments, I feel sick.

Each is a trade-off on what you can do.  I find that I can better handle the pain.  At least with the proper medication.  It is getting more difficult.  Eventually, the pain and sickness will go together. 

So I know I have to go back on treatments very soon.  That doubling time is too fast to ignore.  I have one more delay tactic.

I asked that we wait until after my scan before starting the poisons.   

It is once again time for scans in May.

I have been following info on a new scan that had not yet been FDA-approved for the past year or so.  The PSMA PET CT-Scan.  The new best thing.  This scan might be worth the hype.

Prostate-Specific Membrane Antigen is a scan explicitly developed for prostate cancer.  Clinical trials found the scan to be much more accurate than other scans used to detect prostate cancer, and they found that the scan can identify the cancer cells when they are tiny.  The other available scans cannot find the smaller cancer cells most of the time.

When prostate cancer has metastasized, patients often hear that their disease is incurable.  The goal is to slow down the disease and give the patient the best quality of life possible.  That is where I currently find myself.

I have watched videos and read articles where doctors have used the word “Cure” when discussing the PSMA scan.

My understanding is that with this scan, prostate cancer that was thought to be incurable in the past might be curable.

Even if still not curable, I feel that this scan gives you the best ability to come up with a treatment plan that might be able to extend your life.  It will give the patient options he might not have had before this scan was developed and approved.

At least, that is my hope.

Drugs come out, but I never get my hopes up for the latest drug. 

Often they are just a slight variation of some other drug out there.  A drug that might be coming off patent.  So the Pharmaceutical Industrial Complex will develop this new and improved drug to take the place of the now generic drug so they can continue to charge you tens of thousands of dollars a month even though it might not be any better than the now fifty-dollar generic.

Camden, that is how I see it.  I could be wrong.  Lean a little closer; I want to whisper in your ear….”I don’t think so.”

This scan is different and has honestly gotten me excited about what the medical community might be able to do for me.

I had learned that the only place currently offering the scan in Kansas is at KU Medical Center in Kansas City.

So when I spoke to my urologist about the scan at KU, he talked to me about the cost and the possibility that my insurance company probably would not pay for the scan since it was so recently FDA approved.  Insurance companies like to drag their feet and deny, deny, deny coverage. 

The Insurance Industrial Complex is there to ensure profits for shareholders.  NOT to ensure your health.  Once again, just my opinion.

So I left my urologist’s office a little depressed that I would not be getting the new and improved scan.

Later I got to thinking.  Just how much does that scan cost.  So I called KU Med Center.

That much, huh.  If I sold my plasma for several years, I could get my money back.  Fifty years later, give or take a decade.

They gave me a ballpark figure of my cost if insurance did not pay for the scan. 

That did not seem that bad.  In the cancer world, the price quoted to me was a bargain for what benefit it might provide. 

Anyway, the scan would not cost as much as most of my other treatments and surgeries.  I had another cancer surgery a few months ago, and the hospital bill was over $100,000.  Insurance did pay for that.  Did I tell you how much I love my insurance company?  We are working on our relationship.

 Let me look in the checkbook.  Damn!! 

After checking the couches in the living room, Man Cave (basement), upstairs office where I am sitting and typing at my desk, I might have a down payment.

I also found some gum, two dog bones, and one Paw Patrol Character.  Not sure who he is, but he is here to save the day.

My next stop is my oncologist.

The doctor said:  Blah, blah, blah…Kevin, I am concerned with your doubling time.  It would help if you went on treatments.

Kevin said: “No.”

But it was a polite “No.”  I also told him that I understood that I would have to go back on the poison. 

I just let him know that I was going to KC to watch the Cards and Royals, and then I was getting on a plane to go to San Francisco to explore the area and, of course, watch the Giants get spanked by the Cards.  I wanted to wait until after that.

I also told him that I wanted him to call KU Med Center and order the PSMA PET CT-Scan.  I told him that I had talked with some lovely people at KU Med and that if insurance would not pay, I would.  He reminded me that I owed him money.  Doc, the check is in the mail.  (okay, maybe he did not say that, but I chuckled)

We agreed to meet again after the scan to decide what comes next.  Of course, the answer is Ice Cream.  I think ice cream would help.  Chemo bad.  Ice cream good.

When we meet, I will listen to his recommendations.  I will. 

Boy, I am getting tired of this whole thing. 

Today is May 1st, and it is late in the evening.  Camden, I am no longer writing this prose at my desk.  I am sitting at your kitchen table typing right now.  Yes, just a few paragraphs ago, I was at my desk.  Now I am at your table.  I drive fast. See you in the morning.

Camden, here is my schedule for the next few days.

Monday, I will be with Adalie at Kidz Zone.  Sorry, you will not be able to make it will school and all.  We will have the evening.

On Tuesday, I have my scan.  Tuesday night, I will watch the Cards/Royals with Ron and Dave. 

On Wednesday, Camden, I will take you and your family to the Cards/Royals. 

On Thursday, I fly to San Francisco.   

While there, I expect a call from my oncologist with the scan results.  Hopefully, I will not feel like jumping off the Golden Gate Bridge.  But if I did, I would wear a parachute.

Once I return, I am going on treatment.  Yes, I will.  Honest.

I have done much better than my medical team thought I would in the last few years.

Now it is time for a new and different path than I have been taking. 

Perhaps this new scan will answer some of the questions I need to know. 

Crystal ball

There’s so many things I need to know
Crystal ball
There’s so many things I’ve got to know
Crystal ball

                                    Tell me please before I go

                                    Crystal ball

Maybe the PSMA PET CT-Scan can be…My Crystal Ball.

Later Camden.

Love Papa

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