I Have a Plan…Seriously I Do

Pictured below is my target from fall qualifications.  I am not the best shot in the world, but I think I might have at least scared Brutus.  As you can see a few shots are off the target.  Those were with my back toward the target while standing twenty-five yards away shooting over my shoulder while holding a mirror.  I need to practice.

Anyway, since I obviously cannot shoot Brutus I am going to have to come up with another plan.  I do have a plan.  Seriously I do have a plan.  More later.

I got a call from a friend last week, and during the conversation he asked how I was feeling.  He mentioned that it had been a while since I had written an update.  

I realize that it has been several doctor visits and two surgeries since my last update.  I explained that soon I would be seeing my doctors and I thought that I would wait to see what the latest test results were and then write an update.

Others have also asked how I am doing and feeling.  I need to apologize to those of you who have asked.  I know that I appear evasive.  I squirm and hem and haw.   I know that you are concerned and mean well. 

The reality is that I do not feel well, but how do I tell you that.  So, I lie.  I have experience.  I fish.

So, I will tell you today that I do not feel well.  I will spare you the details.  I do not know if I will ever feel well again.  

I have two choices.  You live with the discomfort that cancer can cause, or you deal with the side effects of treatments.  Damned if you do, damned if you don’t.  

No matter which option I choose you just push on.  It is not being brave.  It is not being strong.  It is just something you have to do so you do it.  

Some days are better than others, and when having a good day or a good moment during a bad day I try to get as much living in as I can.  

I am not talking about doing anything major.  Sometimes it is the little things in life that maybe I have taken for granted in the past that make me happy.  Reading a book, calling my kids, watching a movie, or maybe taking Hope for a drive.

Maybe I will learn to cook.  Ha, ha, ha.  I was a little delirious for a moment.

Through it all I have tried to stay as positive as I can.  Let me tell you it is very tough.  Contrary to what you might think I cannot be positive all the time.  

What I have to acknowledge is that cancer has changed me.  My relationships.  My thoughts.  My goals.  My perception on what is important and what is not.  All these things have changed.  Cancer has changed everything in my life.  Some changes have been good.  Some bad.   Some are very ugly.

Through all this I have found myself from time to time riding the “Pity Train.”  The seats are not comfortable, and the food is terrible.  The train runs between Mount Hopeless and Disappointment Island.  Real Towns.  I try not to take that trip very often.  

Once I tried to get off in Intercourse, Pennsylvania.  Pun intended and yes that is an actual town in Pennsylvania.  I was denied entry.  

I am sure someone in my family is going to tell me to take this out of the essay.  We shall see.  I am just trying to not be so serious.  Smile people.  If I did not remind myself to smile, I would cry all the time.

I have never been a rah-rah guy.  I do not go out of my way to read inspirational quotes or books.  I do not pray for myself.  Never have.  I do like a good fortune cookie every now and then.

Yet people tell me that I am a positive person, and they admire my attitude.  Being positive helps me get through the days.  I try to have a good attitude about life.  The moment that I am in.  I also realize that I cannot beat cancer with only a good attitude.  Brutus does not care about my attitude.  The aggressiveness of my disease will determine how long I live.  

So right now, I understand that my prognosis is not good.  A prognosis is just a snapshot in time.  What we know now.  What we have now in the way of treatments.  I do not have an expiration date stamped somewhere on my body.  I can beat cancer.  I will beat Brutus.  

In the past my medical team has been wrong when I wanted them to be right.   Now I want them to be wrong.   

To make a long story a little shorter I was misdiagnosed by my primary care doctor.  I was also misdiagnosed by my first cancer doctor.

I decided that I would get more involved with my medical treatments and the decisions being made concerning treatments.  I decided that if someone was going to fuck me up then that someone was going to be me.

That is when I met the ghost of cancer future.  This ghost has taken me through hours and hours of research late at nights and into the mornings.  I have learned so much.  It has made me, I believe, my best advocate and has helped me make decisions.

I have heard and read people say that a person should stay off the internet and not research their cancer.  The thinking I guess is that they might get the wrong information from some sites.  I agree that might be a problem.  I would recommend that a person start at the major cancer sites and go to the leading cancer hospital web sites.  If you are looking for alternative treatments, they are not hard to find.

Read medical journals and research papers.  I do find them at times boring and confusing.  Some of them I just read the first few paragraphs and then skip to the conclusion.  If I find one that has piqued my interest I will attempt to read and understand the rest of it.  Nothing will put you to sleep faster than reading a confusing and boring cancer research paper at 2:00 A.M.  Good thing I have a comfortable desk chair.  Thanks Santa.

You need this information to have a better and more intelligent conversations with your medical team.  Many times, I have surprised them with my questions or my willingness to challenge them on their recommendations.  I am sure they wonder how I know this stuff, because they sure as hell have not shared.

You learn all the acronyms.  OS is overall survival.  PFS is progression free survival.  CSS is cancer specific survival.  So many more.  There is one I am trying to avoid and that is KURF.  You will figure it out.

During the years of dealing with Brutus and having seen many different doctors, I have to say that my radiation oncologist was the doctor who took the most time to go over in great detail what was happening inside my body and explain how she might be able to help me.  

She also stated that she normally did not radiate men with numbers as high as mine after surgery.  Humor me doc.  Blast away.

I would email her questions in the wee hours of the morning.  She would respond at a much more reasonable hour.  She would ask what I was doing up so late.  I told her research and training.  She wanted to know what type of training.

Boom shaka laka Boom shaka laka Boom

“Caaaancer Training, Ma’am!!”

Where’s Brutus?  “Raaaadiated up, Ma’am.”

She told me that after radiation treatments I would be a “Lean Mean Fighting Machine.”  What do you mean I would be?  

Okay, maybe part of that conversation never happened.  I needed another little humor side bar.  Have I ever told you that I am funny?  Just a few times I am sure.  “That’s a fact Jack.”

During my research, I discovered that the American Urologist Association has a book called AUA’s Clinical Practice Guidelines for the treatment of Advanced Prostate Cancer.  Oncologists also have guidelines. Many different cancer organizations also have treatment guidelines.  Wow! No one told me that, but I found them.

You find your diagnosis and the guidelines lists many different treatment options.  The doctor recommends a treatment from these options.  The doctor might also take into consideration his experience in making a recommendation.  That is why you find one who has been around awhile.  Once you discuss the treatment recommended by your medical team you decide.  YOU DECIDE!

A few but not all the guidelines I have read reiterate that it is the patients’ choice on treatments.  Some of the guidelines also have “no treatment” as an option that can be chosen by the patient.  

I researched all the options.  Learned all the pros and cons.  I made a treatment decision based on what I learned.  What I chose was not what my medical team recommended.  What I chose was one of the options listed in the guidelines.  I did not pull it out of thin air or get it from some alternative cancer site.  

The doctor’s emphasis was on survival and mine on quality of life.  They are on board with me for now.  It took a while, but they now better understand my goals.  My family understands my decision and I feel that going forward quality of life will remain my focus.  They understand that.  My plan is what is best for me.  We did not vote.  More decisions will soon need to be made.

During my most recent visit with my oncologist he made a point to go over my treatment plan.  He reviewed the plan with me step by step.  I agreed with what he was saying. It was my plan.  

I have since been thinking that I might pull a Lucy.  You know move the football when Charlie Brown tries to kick it.   I am thinking of moving the target numbers which would allow me to stay off the poisons a little longer.  He is going to be pissed.  I might just be getting nervous about going back on treatments.

No matter which way we go I am not going to feel well.  That is just part of the cancer process at this stage of my timeline.  Damned if you do, damned if you don’t.

I visited with my urologist on Friday, November 6th.  Again, my doubling time is too fast.  That is the biggest problem right now.

My goal in all of this is to turn my cancer into a chronic disease.  I cannot be cured, but if we can get this doubling time to slow down it might become a disease that can be better managed.  

I realize my disease characteristics might make that impossible.  But why not?  Why can’t I be one of those men?  I can become one.  I will become one. 

The urologist talked to me about updating my scans.  I know that new ones are needed.  I have not been scanned since they took my ribs out.

He also pointed out that since we were closing in on the end of the year all my insurance deductibles have been paid so having the scans done now would not cost me as much.  If we waited until 2021 more would come out of my pocket.

That is a very valid point.  I appreciated him pointing it out, but I told him that I did not want the scans done at this time.  I wanted to wait.

My body tells me that things are not going well.  I am concerned about what might be discovered.  The scans might show that Brutus has moved into areas we did not know about.

If that has happened, it will be much harder to stay on the plan I have chosen.  It would mean that I would have to go on the poisons now.  

Thanksgiving and Christmas will be here soon, and I would rather not be sick.  The discomfort that I deal with now comes and goes.  The side effects from the poison are with you all the time.  Damned if you do, damned if you don’t.

I have a plan based on science.  I might have to alter that plan from time to time, but I will always have a plan.  I plan on getting better.  I plan on beating cancer.

Actually, I have two plans.  Just in case that medical thing does not work out I have a plan to live my life.   That is where I want most of my focus to be.  Living.  

I have many adventures in my mind that I want to enjoy.  You might call it a bucket list.  Maybe that is what it is.  For me I want to do everything, so it is an exceptionally long list.  Not sure you would call it a bucket list.  

If the medical plan works out, I might get to enjoy some of these adventures twice.  Two trips to the South Pole.  Excellent!!

This will be my last essay on Facebook. 

I plan to continue writing.  Best therapy I know, but not sure how much will be about Brutus.  Maybe all, maybe none.  

In the future, everything will go to the blog.  If you are wondering what is on my mind or how I am doing check there every few months.

If something major happens I will let you know.  I am hoping that is not the case.  I hope the treatments will work and allow me to live a boring cancer existence.

One way or the other I will beat cancer, but I realize that having hope is not much of a plan.  That is why I have two.  

I am winning.  I will win.

Kevin

2 thoughts on “I Have a Plan…Seriously I Do

  1. I always enjoy reading your posts, Kevin, even with news like this. You have a way of storytelling that’s engrossing. The, “I have experience. I fish,” line cracked me up.

    I’m sorry to read that you’re not where you would like to be with Brutus, but you shared two key points in cancer management. First, educate yourself and become your own advocate and, second, it’s YOUR body and YOUR choice.

    I wish you the best with your family as the holidays approach.

    Like

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