Tag Archives: stage 4 prostate cancer

The Calendar

Posted on by
12

I am sitting in the kitchen this Friday morning, June 26th, drinking my morning coffee.  Got back yesterday from spending a few days in KC with the kids and grandkids.  I am still in vacation mode.  I only know what day it is because of the kitchen calendar.  Yes, the calendar.

I find myself looking, no staring often at the calendar.  It was purchased last year while in Alaska.  It has many beautiful pictures.  For the month of June, you see a wonderful picture of a Humpback whale jumping out of the water.  That picture makes me smile.  It takes me back to our adventure and seeing with our own eyes many beautiful places and things.  Including whales jumping out of the water.  The beauty of this world.

When I look at the calendar, I also see quite a bit of writing.  Like most people our lives are somewhat controlled by what is written on the calendar.  Some things are written in pencil, and others in ink.  What is on my calendar tells me where I will be going and doing.  What is on my refrigerator tells me where I have been and what I’ve done.

As I sit here drinking my coffee looking at that whale on the calendar, I can also see the writing on the calendar.  Now I cannot read it from where I sit.  Damn bifocals.  But I know what is on the calendar.

Most of what is on my calendar these days are medical appointments.  A few are for Christy.  Most are mine.   My months are full of medical appointments, and June has been a busy month.  July and August will be repeats of June.  Probably busier.  A few of those appointments are already on the calendar.  

I have two surgeries on the calendar in July and most likely a third surgery in August.  One is a back surgery the others are cancer related.   A couple of those Humpty Dumpty surgeries.  I am going to be home a while.  I guess if I cannot travel, they might as well do some cutting.  I hear that parts are parts, but I wish they could use original manufacturer parts.  I do not want to do anything to ruin the warranty on this great body of mine.  Back in the day.  Many calendars ago.

A guy called and told me that his records showed that the warranty on my car was expired.  I told him it was not my car I was worried about, but I could sure use a warranty on my body.  I explained that I was a classic 1959 model.  Had all the extras you know.  I just needed a little tune up to get that varoom back.  He hung up on me.  That is okay, because right now I have no room on my calendar for any other appointments.

The calendar does more than organize my days, weeks, and months.  Birthdays, anniversaries and other important dates are found on the calendar.  It reminds me to ask Christy if she sent my mother a birthday card.  I do not know what I would do if I were not married.  Probably miss a few birthdays. Also starve.  

What is not marked on the calendar is that I am now starting year six with Brutus.  It is this time of year where I try to reassess my situation.  Where I am at.  A review of my disease.  Right now, things are not going my way.  Improvement will be coming.  I think.  Here is a refresher along with some new information.

You know the story.  When I was first diagnosed my medical team thought that things would be fine.  We later learned that things were not as good as originally thought.  About a year and a half after my diagnosis I had surgery.  A few months later I was told that I could not be fixed.  That my disease had spread and that I was not curable.

After my advanced disease diagnosis, I wanted to know my prognosis.  My medical team did not like talking about my prognosis.  I often heard that my life expectancy would depend on how well I responded to treatment.

I did not like that answer.  That was the play it safe answer.  They had a good idea of my timeline.  I wanted no bullshit.  How was I going to plan for things if I did not know?

This is what I learned.

My prognosis has two numbers.  The numbers were low and just a little higher.  Damn!    

Six to nine years.  My second urologist said that he had a few patients like me who had survived ten years.  He said nothing about any of his patients like me surviving longer.  Damn!

At that time, the prognosis did not mean that much to me.  Nine years, well that is a long time.  That would give them plenty of time to find something that would fix me.  Well that has not happened.  So, I am now thinking that nine years is not long enough. 

My timeline has not changed.  I was hoping that everything we have done would expand my timeline out beyond those nine years.  That does not appear to be what has happened.  Hopefully, the treatments, surgeries, and poisons have pushed me closer to the nine.  I do realize that if we had not done anything that I would most likely not be here today.  My medical team has given me time.  I have seen more days, weeks, months, and years.  I have used a few calendars.

Now I just said that my timeline has not changed, but in a way it has.  My timeline is now one to four years.  I think I would rather say that my prognosis is twelve to forty-eight.  Now that sounds better to me.  

Things are getting serious.  Well I guess they always were, but I could put my disease in the background.  Brutus now has more of my attention. 

As I explained in a past essay that at this stage of my disease it is the doubling time that is the best indicator of life expectancy.  My doubling time has not improved and remains just under four months.  If the doubling time does not improve, well that tells me that I will most likely not maximize my timeline.  

The life expectancy of a man with my doubling time is around six years.  I hope that my 1959 body can find the varoom to prove them wrong.  But I would be lying if I told you that I was not concerned. 

I think of a comment made by my current urologist when we first met.  He could tell that I was feeling good.  He let me know that my disease could blow up at any time so I should enjoy these good times while I could.  He told me that they would not last. 

What I have just shared with you not many people besides Christy and the kids know.   I have tried to stay away from this conversation.  Thankfully not many people have asked.  Usually when someone has asked, I have told them, “Who knows?”  

I have debated with myself if I would ever share this information while living.  Or if it would show up in one of the A.D. essays.  

I feel that sometimes I pull back and do not share my feelings the way I had first intended when I started this blog. I worry about upsetting people.  I do not want to make you feel bad.

Just remember what I say here stays here.  We will not talk about it in person.  It is much easier to say these things to the internet.  Not knowing who reads these essays makes it easier.

I hope that my ramblings will make some sense.  Putting my thoughts and feelings on paper always helps.  

I have always realized that Brutus would have his day.  It is tough knowing that day is getting closer.

What the calendar is reminding me is that we are getting deeper and deeper into my timeline.  I can no longer tell myself that I have plenty of time.  

The battle of living I am winning and will continue to win.  The battle of life.  Well, that is a different story.   Brutus continues to grow at a fast rate.  My medical team is concerned.  I am worried.  I am scared.  I must believe that things will get better.

I look at it this way and as I have said before I will beat Brutus by living to the fullest.   Enjoying each moment that I have.  I know that one day this will all be over.  But Brutus will not have won.  He will not have won because I am not playing his game.  In my mind living and life are two separate things.  I must think that way or my theory does not work.  I ask what good is life if you cannot live?

As a side note a few people like to point out that I might get hit by a bus before Brutus has his day.  Why so many people use the bus analogy I am not sure.  I do not think that many people die from getting hit by buses.  I have seen men taken out by jealous husbands and boyfriends.  I think that happens more often than getting hit by a bus.  I think that it will be a jealous husband who gets me long before a bus.   Just kidding…maybe.  

Christy is not worried.  She asks me what woman would want a 60-year-old man with cancer.  She has a point there.  She is a smart lady.  She married me.  Well I guess everyone is allowed one fuck up in their life. 

Hope you laughed.  I needed a break.  Now back to the not so funny.

I think at times I get a little depressed.  Christy says that I am more than a little depressed.  I try to hide it.

I am not sure if I am now more depressed because of my timeline.  I find that to be just a little depressing.  

Am I more depressed because the coronavirus has cancelled many of my travel plans and I realize that I do not have extra years to do the things I wanted?  That too is a little depressing.  But I would give up my travel plans if the virus would stop killing people.  Damn virus!  Damn Brutus!

I hope to be able to again travel with Camden.  He loves trains.  We build tracks and play trains all the time.  He loves watching trains.

I talked to him about one day getting on the train in KC and going to St. Louis.  Making a few stops in between.  In St. Louis we would of course see a Cards game.  I have talked to him about that trip.  He got extremely excited and gave me a big hug.

I want to make that train trip.  I want to make that trip more than going to New York, New Orleans, Spring Training, fishing off the coast of Alabama, or going anywhere else.  I want to be with the little man.  I want that trip on the calendar. 

When I feel comfortable traveling again, I will hit the road.  The dates will be written on the calendar.

I have finished my third cup of coffee this morning.  So now I feel that I need to go write down some of these ideas before they disappear.

Before getting up from the table I want to take a few more moments to again look at that whale on my calendar.  I see a strong beautiful animal having fun enjoying living.  Not worried about the obstacles of life but enjoying the moment.  We should all do the same.

In a few days I will flip the page of the calendar to July.  I will have the surgeries and make all the doctor appointments.  The calendar is incredibly good in helping me keep track of where I need to be and when.  The calendar does more than that.  It motivates me.  It gives me an urgency that I might not otherwise have.

I do not know what the future holds.  I do not know what the next twelve, thirty, or forty-eight months will bring.  Good things, I hope.  I am prepared to make lemonade out of life’s lemons.  Hopefully, we can share a glass.  I would like to put that on my calendar.

After reading this do me a favor.  Look at your calendar.  What do you see?  Cross some of that shit out and add some play dates.  Live with some urgency.  Be that whale.  Jump out of the water and shine.

Oh, and if you are in the kitchen looking at the calendar treat yourself to a bowl of chocolate ice cream.  Enjoy!

Kevin 

Are You Sure About That?

Posted on by
5

Hello Neighbors!  Yes, I have seen the Mr. Rogers movie.  I liked it and if you have not seen it, I would recommend it.  I give it a five donut rating out of five. Cops rate things on a donut scale.  

I am certain about that rating.  Not sure that I am certain about anything else.  The cancer world is so uncertain. One day you think you have the answers and things figured out, but you soon learn that you do not. 

It has been around three months or so since the last post.  It is not that I don’t have anything to talk about. Many things have happened.  I have just not felt like addressing them. But recently I have been getting text messages asking how I am doing.  People are asking Christy at work. I even got a postcard in the mail from my friend Cindy. Getting a postcard tells me that it is time to talk.

I have been out and about on different adventures and often meet up with friends.  Sometimes it is just for lunch other times we go on adventures together.  

I enjoy my travels and visiting with friends.  I also enjoy making new friends. You know that sometimes when I travel I might stop at a Dairy Queen or two, or more.  Who knew they had so many Dairy Queens off of I-70 in western Kansas. I gained a few pounds on that trip.  

Often I travel alone and when I stop at a restaurant, a rest stop, or even on the highway itself, I will often strike up a conversation with someone.  

I have had a few conversations along the side of the highway with new friends.  It is funny that they all had the same name. Who knew that Trooper was such a popular name?   I have met Trooper Williams, Trooper Johnson, Trooper … you get the picture. I still have a license… for now.  

One of my new friends asked me how fast I was going.  I told him that I was not sure. He told me how fast I was going.  I asked him if he was sure about that. He was. I said something like, “You know sometimes you just gotta let them ponies run!”  Remind me to tell you how that ended when I see you. Long story, but Camden my advice is that you remember to take bond money on your adventures. 

What motivates me to go out and hit the road?  Well you know the answer to that. It is Brutus.  

Brutus thinks that he is going to kill me.  I am not so sure about that. But just in case, I have no desire to sit at home just waiting for it to happen.

I have many places I would like to see. Things I want to do.  Conversations I would like to have.

I have felt urgency since I was told that my cancer was not curable.  I feel that urgency even more now. 

I am hoping that 2020 will be a good travel year.  This weekend I will be in KC for Camden’s fourth birthday party.  I will be back in KC for Adalie’s first birthday party in February.

In April I will be headed back to the White River in Arkansas fishing with friends.  In October I am taking Christy to New York City for a week maybe longer. I have trip ideas for Colorado, Wyoming, Montana, Mississippi, Louisiana, Arkansas, Oklahoma, and of course Missouri during 2020.  We will see how things work out.  

When I am in your area, hopefully we can spend some time together.  I look forward to seeing you.

Man it just does not seem possible that Camden will be four and Adalie one.  Time goes by so fast. It goes by even faster when you want it to stand still.  

This summer it will be five years since my cancer diagnosis.  I remember many of those days like they were yesterday. Or at least like last week.  I had a medical appointment last week. I see my urologist in a couple of days. Oh boy, fun, fun.

Anyway I want to update you on what we have learned and what the future might bring.  In order to do that I would like to step back and explain a few things from the past. I might have mentioned some of these issues before, but I am going to touch on them again.  It will be a good review and helps me explain where we are at in this process.    

I would like to go over four things that I think are very important for someone dealing with prostate cancer or PC for short.  

  • The first being how the cancer was diagnosed
  • The second is the Gleason Score reported by the pathologist after the biopsy.
  • The third is how you respond to curative treatment.

The fourth concern, and really once you get this far is probably the most important factor in your survival, is the doubling time of the cancer.

Now just remember that I am not a doctor.  But I have spent a night or two at a Holiday Inn.  Or was that a Hilton. Oh well, I was drinking. Anyway I just want to say that these are my thoughts, but I do have a little experience.  Let’s look at each one shall we.

Screening or Symptoms?

During the early stages of PC a man will have no symptoms.  The only way to discover the early stages of the disease is through testing.  You will find arguments both pro and con from members of the medical community on whether or not men without a family history should be tested early or at all.  Educate yourself. I will flat out tell you that I think every man should be tested at least by age 50, and earlier if you have a family history. If the test is positive, you will have many options.  It may need to be treated, maybe not, but you need to know.

If by chance you go to your doctor displaying several of the symptoms pointing to PC, you are in a bad place.  I will not go over the symptoms; you can Google them. I pretty much had them all. When I approached my primary care doctor with my concerns, he told me I was too young to have PC.  I was in my mid 50’s. He added that I had no family history.   

Well when I learned that in fact I did have a family history, the tests were done.  I had cancer.  

If you have symptoms before being diagnosed you most likely have a disease that has metastasized. 

I have seen many doctors over the past four plus years.  When talking to the doctors I have noticed a change in demeanor from a couple of them when they learn that I had symptoms before diagnosis.  They realize that my situation is going to be tough, but they do not want to speak those words. I see it in their faces.

If found early PC is very curable, but when not found early it is not.

Be PC aware and get screened.

Gleason Score

Now I am not going to get all medical on you here, so if you want to learn how they calculate the score you can also look that up. I am trying to keep this essay under 10,000 words.  Really, I am trying.

I just want you to know that the highest number the Gleason Score can be is 10.  It is a number that tells you and your medical team how aggressive your cancer is and what treatment protocols should be considered. Gleason Scores of 8, 9, and 10 are the most aggressive cancers.  These are the cancers that kill.

My Gleason Score is 8.  Damn!

Curative Treatment 

Once you have a Gleason Score you and your medical team can talk about treatment options.  I chose surgery as my curative treatment. I had several reasons for choosing surgery. One was that the gland had gotten so large that it was causing a considerable amount of pain.  I wanted the bastard gone.

The goal of surgery was to remove the cancer and cure me.  Around two months after surgery I was tested to see if any evidence of cancer was present.  What they look for is the presence of a protein that is only produced by the prostate. It is called a prostate-specific antigen, or PSA.     So if your gland is gone you should not have a PSA number. The problem is that prostate cancer cells also produce PSA. They are concerned with any PSA number showing up after surgery, even a fractional number.  If you have a number you still have cancer.

I had a number after surgery.  It was rather high. So high that if I still had a prostate they would want me tested for cancer.  Damn!

My oncologist thought that number could not be accurate.  He had me tested again two weeks later. So I had two tests after surgery, both of which showed a very high PSA.  Damn!  

So we moved onto the second attempt at a cure which would be more than 40 radiation treatments along with hormone therapy.  It is also called androgen deprivation therapy or ADT. The drug used was Lupron.

I loved my radiation oncologist.  We sat down together many times and had long discussions about my disease.  I greatly appreciated the time she took to help me understand what was happening.

She told me that she normally did not radiate men with a PSA number after surgery as high as mine.  I said humor me doc and make those lymph nodes glow. She did.  

When it was all over and the tests were repeated, I again had a number.  The hormone treatments combined with the radiation did not quite work as well as hoped.  They beat Brutus up pretty good, but he got up off the mat. The curative treatments of surgery and radiation did not work.  My cancer was not curable. Damn!

Many men will have a PSA of 0 after curative treatments.  They are cured or have at least gone into remission. If their cancer does return, then how long they were in remission often is an indicator of how well they will do going forward.  

I did not go into remission. I have what they call persistent disease. The outlook for men with persistent disease can be tough. The doctor referred to my disease as being systemic. Whatever the hell that means. Come on doc speak English.  

Dr. O explained that Brutus was in my blood and in my lymph system.  He had spread throughout my body. 

So we decided to aggressively treat the disease using a combination treatment or what I like to   call a drug cocktail. Shaken not stirred please.  

I would stay on the poison Lupron, and I would also take the poison Zytiga along with Prednisone.  Clinical trials have shown men using this protocol had their disease slowed down substantially and I was hoping that I might even see a remission with this combo.  I hoped that the side effects would not be bad.  

I took those drugs as long as I could, but the combo was making me sick.  I no longer wanted to be sick. I told the doc that I was done. When the drugs worked their way out of my body I started feeling so much better.  Now I deal with discomfort from time to time, but that has mostly been manageable.

Doubling Time

The doubling time is how long it takes the PSA to double.  It is the growth rate of untreated disease. Of course you cannot know your doubling time when on treatments.

Since I was off treatments we could track the doubling time.

About six months ago my urologist mentioned that the numbers were rising too fast and we might need to think about going back on treatments.  

Three months ago my urologist told me that it was his advice that I go back on treatments immediately.  The growth of my cancer was too fast.

I agree with the fact that the rate of growth is fast. I see the numbers. I did not agree that I needed to be back on treatments. I told him no.

Once you have been through the curative treatments the doubling time of your PSA is the single best indicator of your prognosis. The PSA number itself is important, but what is even more important is the growth of that number.  

Of course you want your doubling time to be as long as possible.  Some men’s PSA might have a doubling time of years. Others are not so fortunate.

The doctors get very concerned when the doubling time is less than twelve months.  Of course the shorter the doubling time, the more aggressive the disease and the harder it becomes to treat.  My doubling time is three months. Damn!

My medical team is a little concerned.  I figure that sometime Brutus is going to get tired and slow down. At least that is what I hope.  

Now let’s talk about my last visit with my urologist last October.

We talked about the numbers.  We talked about the doubling time.  Then he hit me with it.

U3 told me that I would live longer by going back on treatments now.  I knew that he might be correct. I also knew that he was not telling me the entire story.  I was prepared.  

I knew what the research shows, that yes my survival might increase, but by only a few months.

I explained to the doctor that I understood what he was proposing might extend my life.  IT MIGHT GIVE ME A FEW MORE MONTHS! That was all that it would do.

The doctor replied, “That’s accurate.”

I told the doctor that if he could tell me that going back on treatments now would extend my life for five years, then I would do that. I told him that he could not tell me that. He said nothing.

I know that going back on the treatments will make me sick.  I want to enjoy what I have now for as long as I can. I see no need to be sick now and if things do not turn out well, also be sick at the end.  It is not worth it to me. I told him that I was not taking the drugs. He told me that he understood.  

We will continue to watch my numbers. When it reaches my target number I will go back on treatments.  That is what we agreed on months ago and that is the plan we are sticking with. My doubling time was not going to change my plan.  I told him that I would see him in three months. Which again is now only a couple of days away, but who is counting?

That visit with U3 was not so bad.  I was not looking forward to my visit with my oncologist, Dr. O.  Dr. O never wanted me off treatments. He stopped pushing when he realized that he was not going to change my mind.  I was afraid that he was going to make an “I told you so” kind of statement.

On the afternoon of December 11th, 2019 I sat in Dr. O’s office around 3:00 with a lot on my mind.  But one thing I didn’t bring with me that day was the anxiety that I often feel when in his office.

I started thinking about the wise old urologist, U2.  I was going over in my mind some things that U2 had told me about my cancer.  Most of what he told me has turned out to be very accurate. He never recommended the combination treatments like Dr. O.  He told me that I would never see a remission. He was right. I hope it turns out that he is wrong about some other things he told me.  

One thing I wished he would have done was communicate better with Dr. O.  Hell they did not communicate at all.  

That is one thing that Dr. O and U3 do well.  They share information they have learned from my tests and visits.  When I went to see Dr. O I was afraid that I was going to have to go over point by point with him what I had told U3.  It turns out that I did not have to do that.

I was moved into an exam room and the nurse took my blood pressure.  I do not know why they do that. Sometimes my BP has been so high that I was surprised that they did not walk me over to the ER across the parking lot.

My BP was normal.  It was actually better than normal.  It was the best BP I had seen in years.  Christy slapped me on the leg and commented about how good the reading was.

I did not say anything, but the thought going through my mind was that is what happens when you no longer give a fuck.  When you no longer give a fuck things do not bother you. At that moment I did not give a fuck about Brutus or this meeting.  I was going to listen to the doctor then say what was on my mind and leave. Easy peasy so I thought.

When Dr. O walked into the room the first thing he did was give me my results from his lab.  Like U3’s lab the results showed a very fast doubling time.

He knew what U3 and I had talked about.  He went over most everything point by point.  I did not have to say anything.

What he said next was unexpected and caught me by surprise.  Dr. O said the following:

“Going back on treatments now will not help you.  You will not gain any additional ‘Survivor Benefit’ at all, none what-so-ever.   The only thing that going back on treatments now is going to do is make you sick.”

As I listened to him he explained that my treatment goals should change.  Going forward the emphasis would be to reduce my discomfort and pain in an attempt to give me the best quality of life possible.  We were done with combination treatments. What that meant to me is no more drug cocktails.  

He talked about going back on hormone treatments when Brutus had reached my target number.  We cannot stop Brutus, but the hormone treatments can slow him down.

Dr. O was describing palliative care or comfort care.  He was no longer advocating what I would call aggressive treatments. 

Once Brutus develops a resistance to the hormone treatment, we will still have other options available.  We will once again revisit the chemo option. Maybe there will be a new immunotherapy option. Right now for men like me, an immunotherapy treatment is not yet available that is very helpful, but several clinical trials are ongoing that might help a person like me.  You never know what will happen in the cancer world tomorrow.

After leaving the doctor’s office my thoughts again took me back to that conversation I had with U2: The no remission conversation.  He told me that he has had patients like me. He said that a few of them survived ten years. I did not ask him how many he considered a few.  I let it be. I understood what he was trying to tell me.

Later I learned that one percent of men like me survive ten years.  When he said “a few” he was not kidding.

The reality of my situation is that I am not well, but I am not sick.  I am happy about that.  

Brutus will try to take away my physical abilities.  He might succeed, but it will not happen today or tomorrow.  In the meantime I have a lot of life I would like to live. What will be, will be.  

I had a conversation recently with my sleep doctor.  No he does not read me bedtimes stories. He did give me a machine that helps me breathe and I do sleep better.  Maybe another day I will go into more detail about that.  

I always enjoy my visits with him.   During our last appointment we talked about the holidays and our families. Then we talked about cancer.

He said that every time he saw me that I had so much energy and such a positive attitude.  He told me that cancer was not going to beat me. Did I mention that he was my favorite doctor?

He is correct.  Cancer will not beat me.  As I have said before, you beat cancer by the way you live. Right now the score is Brutus 0 and Kevin 1,625. 

I am winning.

I Am Sure About That…

Kevin

This Is “The Place”

Posted on by
Reply

This is “The Place.” Yes it is. Well if not “The Place” then one of the places.

I know you are probably thinking just what the hell is Kevin talking about. I am talking about Table Rock Lake. You know the Great Bambino of all Missouri lakes.

Took a photo of the sunrise over the lake because I like sunrises more than sunsets.

I am not going to debate which of the Missouri lakes is best. Each has its own pluses and minuses. Some would vote Lake of the Ozarks. I can see that. Table Rock does not have a party cove quite like the Party Cove at Lake of the Ozarks. Well except maybe our cove at Table Rock,   but we keep our clothes on. Well at least most of the time. Right, Erin and Megan?

I have chosen Table Rock as the best because of our yearly family vacation there. We have spent a week of vacation there every summer for the past 23 or 24 years…I think? Hell I do not know how long we have been doing this, but it has been a long, long time.

The Brown Family along with the Anderson Family and the Moehring Family have gotten together each year at the lake. There were 23 of us there this year. We keep growing.

Now I will not say that over the years we have not had issues during our time together. I have said in the past that family can be like fish. You know after a few days they start to stink.

Even taking that into consideration I can honestly say that it is a vacation that I look forward to each year. If or when the tradition stops then I will miss this family time together. We have had so much fun and have so many stories.

I have a story about Uncle Barry’s boat sinking in the slip at the dock. I think it was sabotage.

There is the story of Erin and Megan going skinny dipping and a swim suit being washed out into the lake. That was an interesting situation.

There have been a few ER visits over the years. Many fish caught and many stories told about the one that got away.

Many beers drunk, many card games played, many heartfelt conversations had over the years, and many pieces of advice given to nephews and nieces.

Camden! When Uncle Barry said park the boat I do not think he meant there.

My nephew Hayden will be a junior in college this fall. We were talking about his future career plans and he told Erin and I that he planned on being a stay at home dad. Erin explained that he probably should not share that when dating. I kinda like his career choice. Good work if you can get it.

Later we were floating in the lake doing our blue bobber thing.   I was drinking my Bud Light and all of a sudden we were talking about my party. My end of life party, or also called my Celebration of Life. NOT A FUNERAL.

Before I go into the details let me explain how we got on this conversation in the first place. The answer to that is that I really do not know. It just happened.

I am sure I brought it up in some way. How I was able to sneak it into the conversation I do not remember. I probably had too many beers. It was a brief conversation, but it is a start.

Christy and I have had this conversation. She is not in complete agreement with my wishes. Okay, okay, that is an understatement. She told me that if she is planning it then I will be having a church funeral. Noooo not a church!! She said that a funeral is for the living and not the dead. I am not going to like it, but if that is what happens I guess I will be there. Damn.

But if I can put a plan in place maybe I can get what I want. It has worked before so maybe one more time. Christy hinted that if I put everything together I might get what I want. With that in mind I brought the topic up at the lake. Maybe I was looking for Team Kev support.

It is a topic that people do not want to talk about. I understand that. But it is a conversation that I need to have.

When should I have this conversation with family? If you wait too long you never really get to have it, and things just happen. I do not want things to just happen. I want my desires known so people can get comfortable with the idea of playing “Dead Man Trivia” at my party.

No matter how much people wish to avoid having this conversation it has to happen. This is the part of my disease process that no one wants to talk about. No one wishes to talk about death. I need to face it. I need to talk about it.

I am going to share something I have not shared before. July is my cancer anniversary month so to speak. For four years we have lived under this cloud. That worries me a little. You see 70 percent of men who have similar disease characteristics as mine die within five years of diagnoses. I am a little concerned.

I remember a conversation I had with one of my doctors and he told me basically to enjoy the days when I felt good, because those days would not last. I hope he is wrong.

I keep telling myself that I am going to be one of the 30 percenters. I keep telling myself that the poisons have become more effective over the years and that these new treatments are giving men like me more time. I do believe that. I have to believe that. But what if it doesn’t? This shit does not work for everyone.

Well if the shit does not work then I better have my bags packed so to speak. I need to be prepared for the worst while hoping for the best. That means I better have this Celebration of Life party figured out. On to the details, but remember that it is a work in progress.

So I envision a meal being served. Like a last supper with Kev sort of thing. So you better get there early before we run out of food. Who knows maybe by then I will be able to turn water into wine etc.

Most likely I will not have that wine thing down yet so I anticipate it being a BYOB party. I am not paying for your alcohol. I have seen many of you drink. Wait a minute, yes go ahead and put it on my tab. Let’s see how they plan on collecting that.

Now who is going to be the host of the festivities? Well it has to be me don’t you think. Yes I will be very dead, but through the power of modern technology I can still host. I will video myself and it can be played at the party.

Did you really think I was going to miss my own party? You know better than that. I might need a little help so I will name a co-host at a later time.

Now one of the things I will be doing there is hosting a game I call “Dead Man Trivia!”

Yes I will be asking the audience questions about myself. Such as: Can you name the greatest Rock & Roll band according to Kevin? One of my kid’s better win Dead Man Trivia or I will be pissed. If that is possible.

Other things will be happening, but more about that later. This essay is getting rather long and I have other thoughts I want to discuss.

Where to be buried? That is a good question. I own a cemetery plot here in Wichita. I bought it years ago. I read a book that said that I could get rich buying land so I bought a cemetery plot. You know one day we will run out of those. I will have cornered the market. HaHaHa.

The problem I have is that if I am buried there then I cannot sell it. I obviously did not think this through.

I guess I was feeling a little cemetery plot market irrational exuberance. Thank you Alan Greenspan.

I also have a few other problems with my investment. The biggest one I guess is the fact that I do not want to be buried there. Hell I do not even want to be buried. I plan on being cremated. What to do with my ashes? That is another good question.

Do I want my remains in Kansas? I thought since my kids were born here and we raised our family here and actually I have now lived in Kansas longer than Missouri then Kansas would be where I would stay. I have decided that even though Kansas has become my adopted home so to speak it is still not home. That is Missouri. I am even torn about going back to Missouri. I have been gone for so long.

Since I am planning on being cremated I think that the solution to the problem is to have a little of me here and a little of me there, a little of me everywhere.

Now I am use to telling the ladies to stop fighting. I tell them that there is enough of me to go around. I am not sure after cremation that there will be enough of me to go around. So I will most likely keep the sprinkle spots to a minimum, or even change them as I think of a better place. I have a few places in mind that I do not think will change.

Busch Stadium! Yes Busch Stadium. Justin has been instructed to plant a small amount of me in the flower beds in front of the outfield bleachers. It will be like having season tickets, but cheaper. I think I will like it there.

I am going to tell Justin not to put too much of me there. Who knows in 30 years they might tear the stadium down. Where would I end up then? So Justin, sprinkle Kev lightly in Busch Stadium.

Wrigley Field! Yes, Wrigley Field. I hate the little bears. They think that the Curse of the Billie Goat was bad or the guy who caught the foul ball. I like Steve Bartman. What happened to him should not have happened.

The cubs will not ever win another series in Wrigley when playing the Cards. With a little of me in the ivy I plan on haunting those sons of a bitches for the rest of eternity. The Curse of Kevin MF Brown! I like that idea. Not too much Justin. A little of cub hating Kevin is all that is needed.

Those are two solid places on my list. I figured some of me will be kept with Christy and we will be planted together in the far, far, distant future. Maybe even in Kansas. Damn!!

I really do not want to be in a cemetery, but I do want to have a place where the kids can feel like this is where I am. I do not want them to come to a cemetery to visit. I want them to come to Table Rock Lake.

Yes, I think Table Rock Lake would be a nice place for me to spend more time. I am thinking that a little of me could be in a nice urn or even an empty Bud Light bottle. A glass bottle, it has to be a glass bottle. You know a long neck ice cold Bud Light never broke my heart. HaHaHa.

Anyway looking out into the lake east of the cabins off the dock near the no wake buoy might be a good place to drop me down. If you are using a beer bottle make sure the cap is on tight, and use some weights. Or even put a little Bud Light in the bottle with me. I might get thirsty. Double check the cap. I do not want to become fish food.

Erin I know you are asking yourself how I know that area is east of the cabin. That is where the sun rises little girl. Erin has always been directionally challenged.

Every year when my family vacations at Table Rock I will be there. You will not need to go to a sad place to visit. I will be at one of our Happy Places. A place where we have great memories that brings smiles to our faces. That is where I want to be. You can take a boat or a bobber out to where I will be and drop down a Bud Light. I would like that.

Our future is bright. My children, grandchildren, nieces, nephews and their significant others.

I have spent over two thousand words making light of what is a tough subject. What I have written are my wishes. Having these ideas will help with the plan.

Indian Hills Resort at Table Rock Lake will never become “The Place.” It will just be one of the places.

The main place I want to be is in your heart. No matter where my children go I will be with them. It will not matter where I am buried or where I am sprinkled. In their hearts is “The Place” I wish to be.

I am confident that future treatments will work and my plan will not be put into place for a few years. But at least you know my wishes if things do not work out.

Hey, anyone interested in buying some land? I have some property.

Kevin

Giving Thanks

Posted on by
13

Today is Sunday November 25th, 2018 and what started out as a simple Facebook post has turned into an essay. I did not mean for that to happen, it just did. Sometimes I get to typing and all of these thoughts start swimming around in my head and out they come. Sorry.

I guess my fingers just cannot shut up. I lovingly get that from my mom I think. She is a talker. At times I can be as well. Speaking of mom I recently noticed that for the first time someone had unfriended me on Facebook. So I call my mom and ask her why she unfriened me. She pointed out that it could not have been her. Hell we are not even friends. Point well made mom.

So I get up this morning and it is blowing snow outside. So I went back to bed. That reminds me of my college years. If it was raining outside I did not go to class. Bullshit melts you know.

When I did decide to get up I was sitting at the kitchen table watching the snow come down and drinking my coffee out of my Cardinal mug. My Tiger mug was dirty. I used it on game day Friday. Did you see the beat down put on the little piggies by the mighty Missouri Tigers? I loved it.

I do have to be careful and watch what I say. I have a lot of family who live in Arkansas. Others graduated from the University of Missouri and were able to escape.

I have to remind myself that we do owe Arkansas thanks for that great and needed invention called the toothbrush. Now if it had been invented anywhere else it would have been called the teeth brush. Just saying.

So while drinking my coffee I am smiling thinking about the past few days. All the kids and pets were home for Thanksgiving. Last year Thanksgiving was at Erin’s. This year we gathered back at that little house on Judith in Wichita.

So the kids had to travel over the river and through the woods. Sometimes you cannot trust that GPS. I keep telling them that it is a straight shot down I-35 out of Kansas City. Someday they will learn to listen to me, or maybe not.

Amy, Allie, Justin, Cheeto, and Kiki the cat arrived home Wednesday night. Kiki could not stay long. Erin is very allergic to cats. Kiki did not spend much time in the house. On Thanksgiving we welcomed Erin, Steven, Camden, and Dixie.

We have lived in this house almost 28 years. Two years ago was the last Thanksgiving we were all together on Judith. It was then that we all sat down at the kitchen table and we explained to the kids that I was sick. We spoke about Brutus.

Christy and I had known about Brutus for awhile. I had thought that I was going to be able to keep Brutus a secret. I had hoped to never have to tell them about Brutus. Then we learned that Brutus was going to be more of a big deal than we had thought. That led to the kitchen table discussion. The news was not taken well.

The kids made me promise that I would never again keep news about Brutus from them. They wanted to know the good, the bad, and the ugly. I think I have been able to keep that promise at least most of the time.

That discussion was long before this blog was started. Since starting the blog I have made it a point that they would know what is going on before it appears here. I do not want them to learn what is going on from these pages.

Since we were all together again I was grilled on what was going on and if they knew everything. For some reason I think they feel that I am at times holding back. They might be right. I assured them that for now they knew everything (they needed to know). At times they get very pissed with me. Go figure.

So while sitting drinking my coffee I am thinking about the Camden time I had the past few days. A bigger smile is now on my face.

Camden and I had many leaves to take care of. I mulched up most of the leaves with a mower. Camden followed along. It was 69 degrees outside.

This was the first time this year that I have mowed. I had to hire a service last year during midsummer to mow the yard. Dealing with Brutus was just too much at that time. I never knew from day to day how I was going to feel and found that doing yard work quickly zapped me of my strength. So this year I just started the season with a yard service. It bothers me that I cannot even mow my own yard. Damn!

So Saturday, yesterday, Camden and I decided that we are going to tackle those leaves. We got the little John Deere push mower to start and off we went with Camden right behind me.

I bought that mower when we bought the house. Nothing run likes a Deere.

Then we tackled the small garden area in the back yard where I grew a few tomatoes. Keeping up with the big garden and little garden were a bit much this year. The little garden did not get the needed attention. Hell neither did the big garden. Camden helped me pull up the tomato cages and take out the weeds. He was a very busy little man.

So we mowed and took care of the leaves. We fertilized and watered the lawn. We had to get all that done Saturday, because snow was suppose to move into the area Saturday night. After the yard work we spent time at a city park a few blocks away. We had fun. I even felt good.

Next year the plan is to once again to do my own yard work. I do not like the service. They just do not get the yard looking like it should. You know I am one of those guys that take great pride in his yard. I mow twice a week during the spring. I measure the grass to make sure it is the right height. If I see one goddamn Dandelion in my yard well all hell breaks loose. Yes I am one of those guys.

I am trying to change. I do know that there are more important things than keeping your yard looking great. The garden needs to look good as well.

Also Winston tries to help me keep things in perspective. He just pisses on my grass and kills areas. I have finally given up that fight. I just buy sod a couple of times a year and fix his destruction. I am anal.

So with the threat of snow moving into the area Saturday night, plans changed. All the kids left to return to KC Saturday evening. Cammy was the last to leave. They pulled out around 7:30. Cammy was crying. He did not want to leave his Papa. Or maybe it was because he had not had a nap in two days and he was hitting that melt down wall. He was asleep within five minutes of leaving the driveway. He slept for 12 hours. I think I wore the kid out.

So now I sit at the kitchen table. The house is once again very quiet. No little man pulling my hand or shirt wanting me to get onto the floor and play, saying “Papa wook at dis.” I miss him.

I am thinking how thankful I am to have my family. I am thankful for the time we are able to spend together. I am also thankful that they have their own homes to go to. I kinda like this empty nest thing.

All kidding aside having homes of their own is a positive. It tells me that we did good. We raised three kids who were able to eventually leave the nest and make lives on their own. I am very proud of them.

Sitting in the kitchen I find myself thinking about this last year. Things we have had to deal with and overcome. Victories we have had along with a few minor setbacks. A couple of those setbacks were two additional cancer surgeries. Damn!

I think of trips I have made this year. We went to Hawaii, Colorado twice, Wyoming once, Arkansas a couple of times, Missouri several times, and of course St. Louis twice. Been to Oklahoma, wait a minute I was just driving through Oklahoma thankfully. Now that is a flyover state. Okay, okay there are a few places there I want to go. Maybe next year.

One trip we are hoping to make next year is to Alaska. This trip has been at the top of my list. With a new grandchild due to arrive in February I asked Christy if she wanted to put this trip off a little longer so that we had more time to spend with the newest little Heger.

Christy told me that she did not think that was a good idea. She pointed out that I am feeling okay now. We do not know what tomorrow will bring. We need to do this trip now. She is right.

We have a two-week trip booked for the end of July into August. I am looking forward to the adventure.

Joining us for the first week in Alaska will be my sister-in-law Connie and my brother-in-law Brad. They drove up here from Arkansas a few weeks ago to have some fun, which means spending time with me. We also finalized the trip. They traveled with their toothbrush.

I enjoy spending time with them. We had the World Series of Spades while they were here. The teams were brother-in-laws against sisters. We were clicking. Our pitching was spot on and our bullpen was shut down. The women had no chance. We showed no mercy as they tried blind nil after blind nil.

We took them down 4 games to 0. Let me repeat that, 4 to 0. Connie commented that you win some and you lose some. I had to point out to her that they lost them all. She loves me.

I had to make sure there was some distance between us when I made that comment. She has been known to come after me with wooden spoons. Or putting pepper in my mustache while sleeping. You wake up and inhale then you find you cannot breathe. She has short sheeted my bed and put shaving cream on my pillow. I cannot remember all the shit she has done to me. She is just trying to get my attention. She loves me.

I get another cup of coffee and I am still thinking about how thankful I am for the people in my life. So many that I cannot mention everyone today.

I do want to talk about a trip I took in October back to my Homeland. I do plan in the future to have a blog post about that trip, but today I wanted to talk about it as well.

On this trip I was able to reconnect with people that I have not spent time with in 30 plus years. A few I saw last year when I did the “Let’s get Reacquainted with Kevin Tour.”

“It’s been said that everlasting friends go long periods of time without speaking and never question the friendship. These friends pick up like they spoke yesterday regardless of how long it has been or how far away they live and they don’t hold grudges. They understand life is busy and love is there.”

I do not know who said that, but from my experience I find it to be very true.

When I was told that I was sick I said to myself, “I got this!” When I learned that they were not going to be able to fix me I realized that “I might not have this.”

I was told by a friend in the medical field that I needed to figure out what I wanted to do and then go do it.

What I want to do is make a difference in people’s lives when I can. I think at times I am able to do that. I am thankful.

I wanted to travel and see more of our great nation. So far I have been able to do a little of that. I am thankful.

I wanted to reach out to people that have been part of my life. That could be a relationship from years ago or one that is more current. I wanted them to know that our relationship no matter how long ago meant something to me.

In my quest I have not been turned away. The outpouring of love and kindness I have felt I cannot explain. We picked up right where we left off.

This is Brenda with her grandchildren Isaac, Natalie and Libby. Isaac is a cool kids to talk to and he played the piano for me. He is good. I hope one day to be as good as he is now. Natalie showed me her Bicentennial Little Miss Contest Crown. She is a beautiful young lady. Libby I did not get to see this trip. Hopefully next time.

Rusty and I sat down for a few cups of coffee in Wellsville. Hours later we decided that we needed to do this more often. That is the plan.

Dave and I letting whiskey do what whiskey does. We have a long history with that.

Sharon and Jim are two of my favorite people. I cannot tell you what getting back in touch with Sharon has meant to me.

I did not get to spend as much time with Doug as I would have liked. I should have let him know I was coming. Next time.

Jeff and Carolyn are my Missouri brother and sister.

Robyn and Laurie are great friends. Grade school, high school and college. We have had some interesting times together. Spending time with them again was wonderful.

So as I sit here now with another cup of coffee. I want each of my past and present friends to know that you have shaped my life. You have made me the person that I am today.

For that I want each of you to know how truly thankful I am and will always be.

Kevin

Choices

Posted on by
5

It has been several weeks since I have written any update to what is going on with Brutus. A few things have happened. I have had several doctor visits, and many tests to get an idea on what is going on right now inside my body.

I keep putting this conversation off waiting on the next appointment, waiting on the latest results. The results are in. Can I have the envelope please?

Now picture a beautiful young lady with brown hair walking into my study and handing me an envelope. My study was formally known as Erin’s bedroom. I moved a desk and a computer into the room. Oh and a refrigerator for beer.

Now back to the woman. Yes Christy fits that description, but it is not her. Now by young I mean a lady most likely in her 50’s, but 40’s or 60’s would be fine. I do not discrimination by age in my fantasies. I am getting older you know. I hope that aging process continues, so back to the envelope.

The brown eyed lady tells me that the envelope has been hermetically sealed, and that it contains the results tabulated by the accounting firm of Ernest and Tubbs. She hands me the envelope and walks away. History just repeated itself. Damn!

I open the envelope and it says: Dear Kevin – you still have cancer. It is not going away. Now deal with that. You have choices that have been explained to you. You now have to make a decision. That decision needs to be made now. It was signed: Sincerely, your medical team.

That is what this essay is about:  The choices and risks facing many cancer patients.   The pros and cons of those choices and the stress one goes through in trying to make that decision.

Camden as you grow older you will find that life is full of difficult choices and some that are not so difficult. Going to the pumpkin patch with you instead of watching football was not a difficult decision. We had fun. Spending time with you brings me so much joy.

While at the pumpkin patch you had to make the decision on which pumpkin you were taking home. I know you had your eye on a large one, but you could not quite pick it up. The one you chose and carried out of the patch looked great. You made a good choice.

Making a decision can be hard. You should be at my office around lunch time and the ladies want to know where I am taking them to lunch. I ask them why that is always my decision? They say, “Dah, because you are driving.” I throw out some choices and soon a decision is made. Sometimes I have to use my veto power and tell them to pick again if I do not like the choice.

Picking pumpkins and a place to go for lunch are normally easy decisions. Sometimes the decisions we are confronted with in life are much more complicated.

You see Camden there can be problems in trying to make a decision when you have difficult choices. When you make a decision you often do not know if you made the correct decision. Sometimes you know right then, but often it takes time to tell if you made the right decision. It might take a day, a week, a month, or even years to really learn if some decisions you made were correct.

You might wonder how a person goes about making these tough life decisions. I am sorry to tell you that I do not have a fool proof answer to that question. Many times I have learned that I was wrong and I must then correct myself and make things right. I know that is hard for you to believe that your Papa has ever been wrong. Just ask your mother.

I will tell you that you should never make decisions where you intentionally hurt innocent people. I say innocent people because unfortunately some people are evil and make decisions that hurt others and they must be stopped.

When all is said and done you must be comfortable with your decision. Sometimes you will find that your decisions will not be popular, and some might not agree with your decision. They can second guess you and they will. The bottom line is that you have looked over your choices you must make the decision that is right for you.

One day I was driving down the street and over the radio a robbery in progress call was broadcast. I was just seconds from the fast food restaurant that was being robbed.

I pulled into the shopping area and parked out of sight from the business windows. When I got out of my car an officer pulled up. I grabbed a shotgun and we walked up to the side door entrance near the front counter. The officer opened the door for me and I walked into the business pointing the shotgun at the robbery suspect. The safety on the shotgun was off and my finger was resting outside the trigger. The officer came into the business after me and was standing behind me. He was a smart guy, no sense in both of us getting shot.

When I walked into the business I saw the robbery suspect holding a handgun in his right hand. He was pointing the gun at the young female employee behind the counter. The gun was pointed at her face and she was crying.

I identified myself and told the suspect to put the gun down. The exact words I used I do not remember. I might not have been very nice.

I looked at this robber and what I saw was a kid. I mean a kid. He was short. Shorter than I am, and I am short. If he would have been standing next to me he may have reached the area of my chest.

He did not follow my instructions and put the gun down. Rather while still pointing the gun at the store employee he turned his head toward me and was looking at me. I again yelled at him to put the gun down. He did not.

Instead of putting the gun down he turned his body toward me and now was pointing his gun at me. I had to make a decision on what to do. I did not like my choices.

As I looked at him pointing that gun at me I thought to myself, “Kid you get the first shot. I hope you miss.”

Had that kid been a little taller I would have shot him. At that moment I could not do that. He looked so young that I could not bring myself to shoot him. I am not sure I could have lived with that decision the rest of my life. I decided not to shoot.

I again yelled at him to drop the gun. He did not, but he yelled back that the gun was a toy. That gun did not look like a toy to me or to anyone else in that business. I again yelled at him to put the gun down. He did.

The officer grabbed the kid. I grabbed the gun. It was a toy. It was a goddamned toy gun! The kid was nine years old. His father had been in or was in prison at the time for armed robbery. That kid came close to losing his life. I came close to losing my mind.

The gun looked very real to me. A picture of that gun was later on the front page of the newspaper. It was there to show just how difficult our decisions can be and how often our decisions are made in split seconds.

Some did not agree with my decision. Some felt that I put myself in too much danger and in so doing I was placing others in danger.

I made the decision that day on what was right for me. What type of person I was and what type of person I wanted to be. I was willing to take the risk of being shot. I wanted to give that kid every opportunity for life.

It worked out for me. It worked out for him.

Later that night I was called into the supervisor’s office. He sat me down to talk about what had happened. He told me that I had made the right decision.

When our conversation ended and I got out of my chair to leave the office he stopped me. He said, “Kevin, one more thing. I want you to know that if you had chosen to shoot that kid that too would have been the right decision.”

I understood what he was trying to tell me. He was saying that the law textbooks say that I would have been legally justified if I had shot him. I nodded and walked out. I will never forget that conversation. I will never forget that kid. I took a risk that day and it worked out. Sometimes you have to ignore the textbooks.

I have found myself once again having to evaluate choices and make a critical decision. A decision on how I want to live my life. Some believe that I am taking a risk in what treatment option I have chosen in dealing with Brutus. I understand that, but I do not think we can avoid risk in our lives. If I tried to avoid risk then I would not even go to work. Avoiding risk in my work is hard to do. You just deal with it, and try to minimize the risk.

Now in my personal life I have tried to avoid risk. I wear a seat belt when I drive. I look both ways when I cross a street. I refuse to be a passenger in a vehicle if Justin is driving. I do not jump off cliffs at Table Rock Lake. Okay, okay I might have done that. Justin made me. I can tell you that I will not ever do that again. My ass still hurts. Damn! Can you break your ass? I think I did.

We now know that Brutus is again growing. The question now is how far and/or how fast do we let the disease grow before doing something. With most men prostate cancer is categorized as a slow growth disease. Unfortunately with some men the disease is much more aggressive. I am one of them. Damn!

The velocity of growth is something that has to be closely tracked. Cancer grows exponentially. As more and more cancer cells are produced the velocity just increases. You can reach a point of no return. In that I mean that the cancer could grow to a point where it becomes much harder to treat. It might reach a point where it is untreatable. That is why my medical team would prefer that I am on continuous treatments.

I think of it like a game of “Whac-a-Mole.” At first the moles pop up slowly and you are able to control them with your hammer. The moles eventually start to pop up faster and faster. Then you find that you can no longer control them.

Dr. O’s philosophy is that you are either early with treatments or you are too late. His belief is that I need to be on continuous treatments because once you have stopped treatments it is very hard to be able to know the exact time when a person should once again resume treatments. The only way to be sure that you are early is to never ever stop. Now that Brutus is growing again he wants me on treatments.

Eventually the poison they are using will stop working. Brutus is not stupid and he will eventually develop a resistance to the poison. You spend your life going from one treatment protocol to another.

How long you survive depends on how well your body responds to the different poisons and the development of new poisons and treatments to extent your survival. Some work better and longer than others. Some you find out do not work at all. It can be different for each patient. What worked for one of your family members might not work for me, and vice versa. We might be diagnosed with the same type of cancer, but each cancer is so different.

Survival: I find the use of that word to be odd or even funny. Survival is a word often used by my medical team. They do not talk about living. They talk about surviving.

That is where I have this disconnect with my team on how we should be moving forward. When I explained to Erin that I was going off drugs she made the comment that the doctors were just trying to keep me alive. Yes, yes they are, and I greatly appreciate that. But there is one thing that must be understood and that is I have a different perspective than they have or most likely even you have. The only people who will understand what I am talking about are other cancer patients.

There is a difference between living and surviving. Modern medicine can keep you alive, but sometimes you have to ask if this is a life you want to live? Is it worth living?

I have often asked myself that if I knew before this all started where I would be today would I have done the same thing. That answer changes depending on my mood, but most often the honest answer is no. That is not what people want to hear so I never share it. If I had known from the beginning what was going on inside me, and what was going to happen to my body, and how my quality of life would be affected then my treatment decisions might have been different. My body, my spirit, my life has been broken. Just like Humpty Dumpty they cannot put these pieces back together again. But we are here so I will make the best of a bad situation.

I agree that the poison will work better when it has fewer cancer cells to deal with. The more cells the greater the risk that the poison will not be able to control them or they will spread to an area of the body that is not treatable.

I understand that. But I also understand this:

Right now I feel better than I have in years. I can work out. I can run. I can dance. I can sing? Okay, maybe I cannot sing, but I try. I mumble along while driving. I have a great shower voice. Maybe?

I am right now the most optimistic I think I have ever been on how my future looks. I believe that as we move forward things will work out and the treatments will work. I believe that new treatments will be developed. That is how I have to look at things. That is what I must believe. And I do. I do not plan on leaving this world anytime soon.

Now I have discovered one problem from coming off the drugs. That problem is that the discomfort I feel in several ribs bothers me more at times. When it hits I do not work out, run, dance, or sing. I pretty much do nothing. After awhile the discomfort decreases. It never goes away. I feel it right now. Sometimes it bothers me when I breathe. Exhaling does not bother me so much. It is that inhaling. I have been told in the past if something hurts then stop doing it. I am still trying to figure this one out. I will get back to you on that inhaling problem.

Drugs help, but I have told the team that I do not want to take narcotics. I would rather deal with the discomfort then take lortabs or oxycodone. They do work. I just do not want them. At some point they will become an issue with my employment. I wanted a non narcotic pain reliever if possible. They put me on tramadol. I do not know anything about tramadol. I take that back. I do know that shit is not working.

What I do not want to do is go back on treatments and no longer feel good. I do not want the poison in my body. I do not want to have a conversation with someone and then have to check out mentally during the conversation because I have to concentrate on trying to control the nausea that I am feeling and keep myself from throwing up on that person’s shoes. I am not looking forward to going back to hugging the trash can in my office on many afternoons. I am not looking forward to the headaches. I am not looking forward to the increased fatigue and weakness. Just having cancer you deal with fatigue and weakness. The poison just intensifies those feelings. I am not looking forward to the depression.

I went to see Dr. U and it was decided that I should also see another urologist to get his opinion on my situation. This will be my third urologist. I am getting confused. Should I call him U3 and then does that make Dr. U, U2? U1 was Dr. Richard Little or Dick. I fired him.

If Dr. U becomes U2 should I just call him Bone-O? An urologist called Bone-O. My juvenile humor is making me laugh. Ha Ha Ha. Yes Erin I am laughing harder than anyone else. That reminds me that I am about out of Trimix. Need to make a phone call.

(Okay this essay has been sitting around my house for about three days. I have decided that I might need to explain something to you George Strait fans out there so you get the reference. U2 is a rock band and Bono is their lead singer. Still not funny? Sorry I have been laughing for the past three days. You can continue reading.)

I have decided that Dr. U will stay Dr. U. Dick will forever be a Dick. The new guy will be U3.

Dr. U3 I am told is a specialist in advanced prostate cancer. He deals with the worst of the worst. Damn! He and Dr. U are colleagues in the same medical practice, but different buildings. I am told by a PA that U3 is probably more informed on different drug treatments that might help me.

So I am sent to see U3. I am moved into a waiting room where I sat for around 45 minutes. Dr. U3 finally comes in and introduces himself. He sits down at a computer and is reading about me. He then looks me up and down and the first thing he says to me is that I am much younger than most of his patients.

I really do not know how to take that. Is that good or bad or a little of both. I do not know. I am looking him up and down and thinking that he is an asshole. He is looking at me and I think he is sensing that his bedside manner is not playing well.

He then tells me that being younger is a good thing. It is? Really? That is bullshit! I do not think it is good at all. First off, if I had the choice I would never choose to go through this shit at all. But if it had to happen I would have picked a number much higher than my current age.

He then explains that I should be able to handle many of the treatments better than most of his patients. That is code for you are going to be one sick fucker before this is all over, but the treatments should not kill you. Damn! I think.

He then again turns to the computer and makes a comment about what he is reading. He talks about the spread of my disease and makes a positive comment about one of the scan results. The problem was that he was wrong. I did not say anything.

His PA was also in the room. She was a very sharp young lady, and pleasing to the eyes. Just saying. It became apparent to me that she had actually read my history before I came into the room. She corrected the doctor and gave him the correct results of my scans that were done at a hospital in Illinois. They were not positive results. He then responded, and I will quote him, “Oh.” I think that is pretty accurate. He continued to read and he made no additional positive comments. Nothing negative, but he no longer was waiving pompoms or being delusional with optimism.

Then we talked more. We talked about everything that had been done to me and my not wanting to go back on drugs just yet. I told him that since my cancer was again growing that Dr. O wanted me back on drugs right now. That he wanted me on continuous treatments. I explained that I wanted intermitted treatments where I would be on drugs for awhile and then off drugs to allow my body to recover.   I was willing to go back on drugs at some point. I had a number in my mind were I was comfortable with allowing the cancer to reach before going back on drugs. I had a risk level that I was willing to tolerate.

I explained to U3 that I was thinking about paring my medical team down and that most likely I was going to choose him or Dr. O to treat me. I wanted to know what his recommendation would be.

He then told me that Dr. O was right. That if you go by the medical textbook I should be on continuous treatments. He said that the most recent research showed that my survival would be better if I stayed on continuous treatments vs. intermitting treatments. Once again a doctor is using the word survival and not living. Damn!

I am thinking this is not good. What can I say to get him to shut up? Maybe I could throw my pocket square at him and whistle this recommendation dead. Maybe call him for roughing the patient or something. I needed a diversion, but it was too late to fall on the floor and fake a heart attack.

You see Christy was in the room. She has told me all along that she felt that by staying off treatments that I am shorting my life. Now she was hearing what this guy was saying. He was starting to make things more difficult for me. I did not like the situation and I was beginning to like him less than before, but boy that PA was cute.

We talked more and I gave him my reasons for not wanting back on treatments at this time. He was actually listening. I wanted him to understand that I was not a textbook problem. I was a human being and that I wanted to be treated as one. I wanted him to know that I understood the risks and that I wanted my opinion to matter. Once again there is a time to ignore the textbook.

You see I want to live and not just survive. To the doctor’s survival means being able to sit on the couch with drool running out of your mouth not really knowing what is going on, but still able to watch Vanna White turn letters for Pat. That is not living. Hey, I do that now. Never mind.

He then began to talk about quality of life. Thank God. He understood my quality of life issues. He told me that if I did not want to go back on drugs yet that he would work with me on that. He told me that he had a number in mind that we could not let the cancer pass. He gave me that number. It was my number!! It was the number I have said all along I wanted to reach before going back on the poison. I started to like him a little more.

Christy has told me that when I see the doctors that I am not very nice and I am grouchy. What I am is defensive. I do not mean to be, but I know that I am.

I cannot tell you how much stress is put on a person when they have to deal with cancer and also have to deal with a medical team that is not quite on board with your wishes. I have decided that if you are not on Team Kev then you are going to be gone.

I told U3 that I was not happy that Dr. U and Dr. O did not communicate better. I asked that he communicate with Dr. O. I told U3 that I would be seeing Dr. O the following week and that after that visit I would make a decision on who was staying on Team Kev and who was going.

We talked about future treatment options and made an appointment for January. Not so sure it is going to work. What I would like to do is hire his PA, but they come together. Will have to see how that works out.

I have to say that over the last few years I have seen many doctors. Both men and women, and I will tell you right now that I have been very impressed with the lady doctors. In my opinion they take more time in explaining things, and I feel that they are better listeners. The female doctors that I have visited with have been more upfront and blunt than their male counterparts. I appreciate that. U3’s PA knew my history, and she probably already has a treatment program in mind. I want her on the team. I guess U3 can join us as well. I will see them in January.

So I saw Dr. O a week after seeing U3. Dr. O told me that he has communicated with U3. After I picked myself up off the floor I told him that was excellent.

Then Dr. O said something else that took me totally by surprise. He basically said that he was caving to my request and was going to go along with me and the target PSA number I had chosen. I was stunned. Maybe now I can start being a little nicer.

Of course all of this depends on how fast or the velocity of the disease. If the velocity keeps increasing then I am back on the poison sooner than I had hoped.

It took a year of treatments to get the number down to where we wanted. I am hoping that it will take a year before having to return to treatments, but it might be nine months or even six months. I will take whatever I can get.

Taking everything into consideration I am happy. I am very happy.

Is it the most optimal plan? I do not know. I do know that it is the best decision for me. I know the risk. I understand the risk. I can live with the risk.

Some would say that what I am doing is allowing Brutus the first shot. That might be right. We do not know. If I am giving Brutus the first shot I only have one thing to say:

I hope he misses.

Kevin

Why?

Posted on by
2

September is Prostate Cancer Awareness Month. I guess every disease has gotta have its month. I think of it more as a day to day disease. But that is just me.

I thought about talking about the statistics of this disease such as a man dies every 18 minutes in the United States from prostate cancer. That it is the most common diagnosed cancer in men and the second biggest killer.

I thought about writing about the pros and cons of having a PSA test and at what age. That is a question constantly being debated. The medical community really has not come to a consensus. It is a discussion you definitely need to have with your doctor around the age of 50 and possibly tested then or at least by the age of 55. Now if you have a family history that is a different story. Testing then should be much sooner.

I guess that I should put in here that I am not a doctor. You should seek competent medical advice. Good luck finding that.

The above topics need to be discussed. Just not by me. They are boring and you can read all about prostate cancer on the internet. I have. Just stick to legitimate web sites. Of course if you want alternative treatments they are out there. One person told me that I need to drink hydrogen peroxide. Excuse me, I think not. For now I will stick to the regular stuff that kills you. Bartender, give me a tall glass of chemo along with a shot of Lupron please.

So what do I want to talk about? Well me of course. I like talking about me. So here we go.

Eisenhower was president and he wanted to conduct a new census so my parents made the journey to their homeland in Mexico. No, no, no I was not born in a barn but rather in Audrain County Hospital in Mexico, MO. I do not know anything about a census going on just thought I would throw that in there. Eisenhower was president when I was born. I like Ike.

I do get a lot of mileage about telling people here in the Land of Oz that I was born in Mexico. I even show them by green Barnes & Noble Card. I do get around to telling them Mexico, MO. Many people around here think I am Hispanic. I have been in so many homes where the people will look at me and start talking to me in Spanish. They eventually figure it out.

So why did I just waste valuable space and talk about really nothing related to cancer? I am stalling I guess. You see what I am going to share with you is very personal and hurts. I will talk about my family and some of you know them. More specifically I am going to talk about my father.

One thing you need to know about prostate cancer is that it is one of those hereditary cancers. Most men who get the disease do not have a family history, but if you have a close family member who has the disease then your risk of getting the cancer is greater than someone without a family history. The more family members with the disease, then the higher the risk you have of getting the disease.

If you have a family history you need to start getting tested at age 40.

African Americans suffer from this disease at a higher rate than white males. Men of color should be checked at age 40 even without a family history of the disease. Please talk to your doctor.

When I started this blog in a way I knew that I would be opening up myself to family, friends, and strangers. That is something I was not sure I could do. It has been easier than I thought, and most of the time I feel better after writing. In writing you do not have that personal interaction that makes you think twice about what you are going to say. So most of the time I just say what I think and feel, and of course try to throw in a little humor from time to time. I need to laugh. I am not sure there will be much more laughing during this conversation. I will try.

I do feel like I am actually talking to you and not writing. Funny isn’t it. Of course I picture you on the couch in your lingerie while we have this discussion. Hey this is my blog and I can have those fantasies. I have that visual because most of my readers are women. Or at least it seems that way since I am most often contacted by women who have read the posts. Some of the people who have contacted me are going through cancer themselves or they have a loved one who is dealing with cancer or they have lost someone to cancer. I hate cancer! They are kind and tell me that I have helped them. That makes me happy.

Some people contact me by email after the essays, and others comment on the Facebook link. I am going to ask that you do not comment on this essay. Just read. I think that you will understand why I ask that as we talk.

Years ago I was visiting my grandfather at his residence in Columbia. My grandparents had moved there after selling the farm near Mexico to be closer to quality medical care.

On this visit my grandfather started giving me things. He started giving me household items like he no longer needed them. I did not understand why he was doing that. I did not need or want these things. He did give me some old pictures of when I was growing up and spending time on the farm. I do love those.

During this visit he said out of the blue that he would not give five cents for his life on this earth. He hoped that Heaven would be better.

I did not understood what he meant by that or why he was saying that. In my mind he had a good life. I did not ask questions. Things were getting weird and I just wanted to leave.

I want to take a short time out from this cancer talk for just a moment to comment on my grandfather’s farm. I want the people to know who live there now that I get sick every time I drive by and see what has happened to the property. If you do not clean up that place and put some paint on the house that my grandfather built I will one day stop and pull up into that long drive. When I get out of my car I am going to bitch slap somebody. You have been warned. Thank you for letting me vent. I feel better.

Now I want to get back to my grandfather. That day that he got all weird on me was the last time I ever saw him. He died a few months later. He looked good when I saw him. I suspect he knew that we might not see each other again. That I believe was why he was acting the way he was. That is why he said what he said. I did not even find out that he had died until several months after his death. My father never told me.

I learned that he had cancer. I do not know if that was what killed him or not.   I did not know what type of cancer he had. My father never talked to me about my grandfather’s illness. Hell we rarely ever talked.

Now I need to explain a little about my father. If I told you that we were not close that would be a major understatement. I would say that we did not like one another. He was not what I would call a good person. I will explain, but I do not want to turn this into a bash dad essay. It might turn into that.

I grew up in a violent home. My father was a physically abusive person.  Not every day, but when it happened, it happened big. You walked on egg shells trying not to piss him off. When he drank it was much worse.

When I was a child he was either hitting on me, my brother, or mother, but as I got older I was hit less often. At times I could stop my mom and brother from getting hit. I did not like the man as a person or as a father. I did learn a little about being a father from him. I have asked myself what my dad would do in situations I found myself needing to handle. Once I answer that question I just do the opposite. It has served me well.

I moved out in August of 1978 to go to college. I never lived with my parents again. My brother told me that things got worse after I moved out. They eventually divorced. Thank God.

You wonder why am I telling you all this. I really do not know. I guess my therapy. I wish I had a relationship with my father. I wish he was different. I have so envied friends who have good relationships with their fathers. I never could pick up the phone and talk to him and tell him about the kids or seek his advice.

I guess I am telling you this because of what I am going to tell you now. It is kind of like background information for the finale.

In February of 2012 I got a call from my mother that dad was dying. He had cancer and he did not have much time left, and if I wanted to see him before he died I needed to get there. I was not sure I wanted to go. I decided to go because I had things that needed to be said.

When I arrived he was in a drug induced comma due to the pain from his cancer. He could not talk and if I had been told that I probably would not have gone. Since I was there I decided that what I needed to say was still going to be said. Not sure in his comatose state that he understood anything I was saying, but he might have.

So I sat in a chair next to his bed and talked to him. I am sure I said some mean things. I am also sure that I told him that I wished things were different. It hit me hard that we would never be able to reconcile our relationship. That made me sad. It hit me that I loved him. I told him that. I am sure we had some good times. I just cannot remember them.

All food and water had been taken from him. He was going to die soon, but I was told that he could linger for days. The next day I left. When I got home I got word that he had died.

Cancer most likely killed my grandfather years earlier. I did not know what kind of cancer. Cancer killed my father, but I really did not know what type of cancer.

My father had chemo and his white and red cells were all messed up. His mother my grandmother had died from leukemia. I thought that he also must have had a blood cancer of some type. No one told me different. His third wife did not tell me. This was the first time I met her. I never met his second wife.

A few years before my dad died I started having symptoms of cancer. It was 2009, but I did not realize that what was happening was cancer. I did not know nor did my doctor think that I had cancer. When I told my primary care doctor of my problems he gave me pills. That little blue pill and it worked wonders. I was happy. But as a man in his late 40’s should I really need that medicine? Were we treating symptoms of a disease that we had not identified?

When I was in my late thirties I had my first spinal fusion surgery. I had a herniated disc in my upper back/neck area that was fused. I was told that I had degenerative disc disease. I was told that in the future I would need more surgeries.

My neck started acting up again, and I was able to control the pain with shots. I had a pain management doctor and for years I was given epidural steroid injections. Eventually they stopped working and surgery became my only option.

During this time I was also experience some urination problems. Since I was seeing doctors all the time I decided to bring up my problem. I again had a talk with my GP and more medicine was given. He asked me if I had a history of prostate cancer in my family. I told him not that I knew. He told me that I was too young for prostate cancer, and I did not have all the symptoms. I was not tested.

If you research the symptoms for prostate cancer I had most of them, but because of my age and no family history I was not tested. People my age he seemed to think did not get prostate cancer. Boy was he wrong.

I thought about all this and realized that I really did not know what kind of cancer my grandfather or my father had. I started doing some checking and asking questions. What I learned was that they both had prostate cancer.

When I was back to see my doctor I let his PA know about my family history of prostate cancer. I was tested right then. The PSA was high and my PC doctor told me that with that number I had cancer. He sent me to see an urologist Dr. Richard Little. I think I have talked about Dick before.

When I first met Dick he did not think I needed surgery. We could watch and wait. I was also trying to avoid neck surgery.

I was able to put them both off for a year. The pain in my neck and back finally got so bad that something had to be done.

Also my PSA numbers had a dramatic increase in a short time. I could no longer avoid surgery. When I got a second opinion I learned that the cancer threat was much greater than we had thought. Damn Dick.

So I had neck surgery in August of 2016. They fused C4, C5, C6, and C7. Two titanium plates were placed in my neck and I am not sure how many screws. Neck and back are much better now. Have lost range of motion, but who cares.

So after my neck surgery in August I had cancer surgery in December of 2016. That started the process we are currently trying to deal with. How long will this go on? Who knows?

When I am sitting by myself and I am trying to figure things out I realize that what has happened to me did not have to happen. No it did not. That brings us to the title of this essay and the million dollar question. Why?

I realize that men from my father’s and grandfather’s generation did not talk about their problems. They want to keep things private. I would imagine that many families have relatives that have medical conditions that they really do not understand, because the person with the problem does not want to talk about it.

Men tend to suffer in silence. They do not want to talk about prostate cancer. They do not want to tell people they have prostate cancer. They do not want to talk about what the disease has done to them.

Even knowing that I do think that most men would tell their children, “Hey get checked.”

Why didn’t my dad tell me that he had prostate cancer? Why did he not tell me to get checked?

The disease is hereditary. You can get it without a family history of the disease, but if you have a history you are more likely to get it. I am sure my dad had the disease for several years before he died.

If I had been told earlier, like when my father suspected that he had the disease or even when my grandfather died, to get checked then my disease, I feel, would have been found at stage I or stage II. I could have been cured. I would have been cured. Why?

It is hard for me to accept that my father kept information from me that would have dramatically change things. Again, what I am going through did not have to be.

Christy wants to think that maybe he did not understand how important it was for my brother and I to know about his disease. I do not believe that for a minute. His father had the disease. He knew.

I learned that he had commented before he was diagnosed that he knew from his symptoms and from his father’s experience that he had the cancer. He waited too long to be checked.

I do know that the history of prostate cancer killing men in my family will end. I will not allow this to happen to my son.

He will be checked at age 40. A baseline PSA will be determined and his numbers will be checked every year. If or when the disease hits him he will be ready. This will not take his life.

What my father has done to me by withholding that information is unforgivable. But I have had to move on. Hate will consume you and destroy you. You have to let it go.

I have accepted what has happened. I have not accepted what is going to happen.

I cannot let what has happened consume me. I cannot worry about the future. I have to live in this moment and make it the best that I can.

I was going to get this disease. That most likely could not have been prevented. It was in my genes. What could have been prevented would have been the severity of my disease once it was identified and diagnosed. If I had been anticipating it, and looking for it we would have found it much sooner. I would not be in my current situation. This did not have to happen.

I am finishing this essay on Friday night the 14th. Earlier today I had a discussion over the phone with a nurse from Dr. U’s office. She had the results from my latest tests. This week was the start of my once again every three months appointments with Dr. U and Dr. O. I see Dr. U next week.

She gave me the numbers. They were not good. I guess they could have been worse. You see I am looking for the positive.

Since I am off drugs these test results were going to be very important to me. If your PSA number doubles in three months or less that is very bad. I understand that is a sign that you have metastatic disease, and that it is spreading.

It has been three months since my last test. My PSA has gone up six fold in those three months.

Ruh-roh Kev. Yes Winston that is not good.

I feel as though my father gave me a death sentence. Each treatment protocol I try is like a temporary stay of execution. I live with the fear that my executioner will have his day.

If there is an afterlife and I again see my father I would like one question answered:

Why?

Facts

Posted on by
3

Facts! You have them or you don’t. I am a fact gatherer. That is my job, but many days the facts that I need are hard to come by. Sometimes I have to use the totality of the circumstantial evidence in order to try to explain what has happened to get a case charged. Prosecutors like facts that are more indisputable, you know, what they call evidence.

Evidence such as photographs found on the bad guy’s cell phone, recorded interviews, DNA evidence, the results of medical tests. That type of evidence or facts is harder to dispute.

Prosecutors do not like hunches, gut feelings, or suspicions. I have to tell families that it is not what I think happened, but what I can prove happened. What theories or hypotheses I might have always go better with evidence.

Now, having a gut feeling or suspicion that something is not right will drive me to work harder to develop the facts. Sometimes it just takes time.

My medical team also likes to deal with facts. You know, such as the fact that no matter which doctor I am seeing they each want me to pee in a bottle at every visit.

Conversation goes something like this: “Mr. Brown would you please pee in this bottle.” “If you hold it still this time I will.” The bottle people!! The bottle!! Get you head out of the gutter.

Sorry attempt at humor, I know.

Anyway, not having the evidence or needed facts can be a problem for my medical team.

If you remember, last time I spoke about the theory developed by my urologist concerning the spread of my cancer. It sounded good, and made sense. Three of the four doctors working on my case at that time agreed it was possible. My oncologist does not agree.

Dr. O wants more facts. He needs evidence. He still wants me to have the second surgery and have the surgeon take out more ribs to hopefully find answers to what is showing up on the scans.

You know that surgery that I cancelled in April basically because I was pissed with the surgeon? Yes, that surgery. I agreed to meet with the surgeon to go over the post operation scans, and to listen to what he had to say.

When Christy and I met with the surgeon it was very different than past meetings. As soon as he walked in, he sat down and wheeled his stool over to me with pad and pen in hand. He sat next to me and explained what had been done in the past and what he wanted to do next. He spoke to me and not Christy.

He started drawing a chest cavity. He put in the ribs and talked about where the scans showed the areas that I had lesions that concerned everyone. He explained this would be a longer and more involved surgery.

We talked about Dr. U’s hypothesis concerning my disease. It made sense to him. He knew what he had seen inside my body during the first surgery, but he would also prefer to have more evidence. He said that Dr. O still wanted more evidence.

The conversation that day was at times gloomy. We all knew what Dr. U’s diagnosis meant if correct. I knew what treatments Dr. O was going to push. Damned if you do. Damned if you don’t. Cancer sucks.

He told me that he did not know if another surgery would provide the answers we were looking for. He told me that this was my choice to make. He did not need an answer now. He gave me his cell number and told me to text or call if and when I wanted to talk about the procedure. I told him that I would be in touch. We left.

On the way home it was a quiet drive most of the way. We were on the interstate and I was doing my customary 85 mph (I cannot drive 55). I looked over at Christy, and she at me.   She started crying. I reached over and put my hand on her knee and told her that everything was going to be alright. She said to me, “I am having trouble imaging a life without you.” Wow. That hit hard.

She told me that she wanted me to do everything that I possibly could to stay alive. She let me know that I should not be so hard headed and might even do what the doctors ask of me from time to time. I thought I had been. Oh well. Different perspectives I guess.

Now I can deal with an angry Christy, and many times have. What I find hard to deal with is a scared and crying Christy. She had me where she wanted me. She had her say and calmed down. The car again got quiet.

As the drive continued my mind went back to the first time we met. It was near the end of April 1981 my junior year of college.

IMG_7213 (1)

I was living off campus with my friend Ron Hall. It was a beautiful weekend day and finals would be starting soon. I knew that if I stayed at our apartment that I would not get anything done. So we played a game of ice ball to decide how we were going to tackle this conundrum of needing to study, but also wanting to do something outside.

While trying to figure this out we played ice ball in the living room until we ran out of ice. You know you empty all the ice trays and bags if you’ve got them and take turns pitching and hitting. We had a little bat and when we hit the ice we did not have to pick anything up. It just melted. If you got hit with the ice it did sting.

I do not know if I won or lost. It was hard to keep score during those games. All I know is when the ice was gone we still had not figured out how to avoid wasting the day. Playing ice ball is not wasting the day.

We ended up driving to campus to study at the library. That, I thought was going to be a big waste of my day. It was not.

If I had to be at the library I had a table where I normally liked to sit at which was hidden in the stacks of books. Friends knew of my table and would show up for a few words or sit down to also study. So many days it was like a party at the library, but with no one around to tell us to shut up.

That day in April was going to be different. You see, someone that I did not know was sitting at my table. She had not been invited, and even had books spread out. I was looking at her, and Ron asked if I wanted to go find somewhere else to sit. I said, “Hell no that is my table.” Also, she was cute.

I told Ron that we were going to sit there. I also told him that I would bet him a beer that before we left I would have her phone number. Ron took that bet. I now had a mission.

So we sat down and said hello. She moved some of her books to make room. Looking at her books I said to myself “Freshman.” At some point I started talking to her, and she played it rather coy. She acted like I was bothering her. Oh she was a stubborn one.

At some point the cute freshman girl asked me to watch her books while she went to get something to drink. I said sure.

She returned with two Cokes from the McDonald’s across from the library. I was and always will be a Pepsi guy, but hey I drank it.

I knew at that point that this girl wanted me. Why would she risk smuggling in a Coke for me if she did not want our encounter to continue? Drinks were not allowed in the library. If caught she could have been expelled from school (Maybe not, but it does make for a better story). She was taking a great risk to impress me. She could tell that I was worth it.

So while drinking the Coke I took that as study break time. We started talking more. At least I talked more. She was playing hard to get, you know. She looked more and more annoyed. Me? I have often seen women use this tactic.

Remember, I had a bud light riding on this encounter. I would not be deterred.

I told her of a party at Dr. Tom’s residence. He was a management professor who had become a friend and he was having an end of year party at his house. She gave me her phone number. Ron bought the beer.

So I later called and made arrangements to pick her up to go to Tom’s party. She lived in a dorm on campus. When I got there I called up to her room. At that time it was an all girls dorm. Men could not just walk around the place. It is so different now. Thirty seven years too late if you ask me.

Anyway she said that she would be right down. I waited and waited, but still no freshman girl. She was standing me up. Then she came through the front door. I was at the wrong dorm!

She tracked me down. I told you that she wanted me.

She lived over at the Laws, Lathrop, and Jones complex of dorms. They all looked alike to me, and I still do not remember which one she lived in. She found me.

We went to the party and had a good time. Had one more date that semester before she left town to return to her home in Carthage, MO for the summer. Her sister attended summer welcome that year and that freshman girl came with her to see me. She may have even brought a Coke. She wanted me.

My senior year started and now the little sophomore girl started to become a bigger part of my life. She wanted to be with me. I realized at some point that year that I wanted to be with her. The rest is history.

Camden, that is how I met your Nana, and it all started in April 1981, thirty seven wonderful years ago. Now I would imagine that the little freshman girl’s recollection of events might be a little different. Just remember, I have the facts.

What Christy was trying to tell me in that car ride from the doctor’s office was that she was not ready for our thirty seven year ride to end. So I better get with the medical program.

Later I decided to contact the doctor with some questions. I did not want to interfere with his work so I texted. He then called. We spoke a few more times and I then agreed to another surgery.

He wanted to do it ASAP. I said okay, but that I had a fishing trip planned and I would not let surgery interfere with that trip.

He wanted to know when I returned. I told him that I would be back in town on May 21st. He thought that May 22nd sounded like a good day for surgery. I was not terribly excited about the idea, but agreed. We got off the phone and a nurse called me later and told me to be at St. Francis at 6:00 A.M. on Tuesday the 22nd. It was a done deal once again. I was back on the surgery schedule. I then went fishing in Colorado.

When I got home on the 21st I made a short to-do list. One of the tasks on that list was to call mom. Maybe that one can wait. I know. I know. I should call mom, and I did. It was at the top of the list, but was the last thing checked off.

Sometimes, no let me restate that, I always hate talking about cancer with mom. I have tried to shield her from what has been happening the past few years. Whether that was right or wrong, it’s what I did.

Now she knows about this blog. I did not tell her about the blog until about a month or so ago. As a friend pointed out, I have been a bad son. I knew that someone would eventually bring the blog up in conversation with her. That is what happened. I did not tell her until I had to. How do you tell a parent that you are sick and might die? Walking that tight rope has been hard.

Recently she asked me if I felt that I would be able to beat this. I did not have to think about what was the best answer to give her. I did not hesitate or stall in giving my answer. I told her: Yes! YEs!! YES!!! I do think that I can beat this. I am going to beat this.

Whether that is true or not, I do not know, but that is the only answer you can give your mother. (Maybe she will not read this one.)

Life is so precious and in the history of the world we humans are here for so short a period of time with some people here shorter than others. Cancer patients hold no monopoly on dying before their time. It can happen to anyone.

Have I got you in a good mood yet?

In my job I have unfortunately been the witness to a few deaths. The deaths I have witnessed have normally been caused by acts of violence. They did not have to happen.

Years ago an entire neighborhood was out on a hot summer day, but instead of a neighborhood garage sale or barbeque they got into a big ass fight. I and a few other guys were sent to keep the peace. Right?

When I arrived I found this to be a very serious fight involving many people. Some had weapons.

I saw a man lying on his back on the ground. I walked over to him and discovered that he was having difficulty breathing. I let the dispatcher know that I need EMS and Fire with me, but they were not coming into this mess until I and the three other officers with me could get the fight under control and make it safe for them. I was on my own to try to help this man.

I knelt down beside him looking for injuries. I saw none. I saw no blood. He looked at me and wanted to know if he was going to be okay. I told him that he was. I really thought he was. His breathing was getting worse. He did not look well. I asked him what had happened, but he would not talk about what had happened. He just wanted to keep hearing from me that he was going to live.

He stopped talking all together and was gasping for air. I heard him exhale and a gurgling or rattling noise was coming out of his chest and into his throat and out his mouth. His body started shaking. Then everything stopped. His last breath had turned to air.

At the exact same time that I was witnessing this I saw a woman out of the corner of my eye who had walked up and was standing about fifteen feet from us. Her eyes were fixated on the man on the ground. It was like she was in a trance. Her arms were down to her side and I saw that in her left hand she held a large kitchen knife. The knife was resting against her thigh and was pointed down.

Seeing the woman with the knife, I had to get up and leave the man. I walked at an angle toward the woman so she could still see the man. My eyes were darting back and forth from her face to her left hand. I wanted to see if she was going to offer any kind of facial expression that might tell me her intentions. I did not want to get stabbed.

I grabbed her left wrist with my right hand. My left hand then grabbed her hand and my right hand slid down and took the knife.

She finally looked at me and asked if the man on the ground was going to be okay. I told her that I did not know. She told me that the man was her husband. That during this big fight he was attacked by some other men with a baseball bat. She had gone into their house to get the knife so he could protect himself. When she came back out, it was too late.

At this time Fire and EMS were with her husband. He was dead. He had been hit so hard with the ball bat that his aorta had been torn from his heart and he internally bled to death.

The gurgling noise that I heard was what is known as the death rattle. This was the first time I had ever witnessed a man die. It was the first time I had heard the death rattle. Unfortunately it would not be the last.

On that hot summer day all that man wanted from me was an assurance that he was going to live. I told him that he was. I hope that I gave him a little bit of hope before he realized that what I said was bullshit.

I hope that when I tell people that I am going to be okay, it gives them a feeling that I am doing well and confidence that they do not have to worry about me. I cannot help to feel that when I tell people that I am going to be okay, that I am once again dishing out bullshit.

Just like that man all I want is for someone on my medical team to tell me that I am going to live. That I am going to beat this. They have not. I do not expect to ever hear that. I guess they need more facts.

No one knows when their time will come, but death will take each of us at some time. When I play out the scenarios in my head I know that death will ultimately win. But not today! I will not let cancer win today. Each day before leaving the house I tell myself that today is my day, and I am going to make today the best day possible. Going forward, I will do what I think is best for me in order to live the best life that I can.

I hope this surgery will help answer some questions, because I am getting tired of them, and goddammit they hurt!

Before the surgery I wish that I had bet Christy a beer on how things were going to turn out. I have a good history when it comes to betting beers. I live with the evidence. That is a fact.

I will have a surgery update coming later.

Spoiler alert….I live.

Kev

Surgery

Posted on by
2

In the March 18th post I was talking about needing a rib biopsy and how they were going to give that a try in an attempt to avoid surgery. I had two meetings with the surgeon. The first was with just me and the second one Christy was there. The meeting with Christy present was so different than my meeting. Let me explain.

The doctor was a Via Christi cancer surgeon. Christy works for Via Christi in the lab at St. Francis Hospital.   She has a degree in Laboratory Sciences from the University of Missouri. She is a blood specialist and works with cancer patients who have leukemia and other cancer blood disorders. At St. Francis the color of scrubs you wear designates what part of the hospital you work. When the doctor walked into our room along with several other people in white coats his attention and focus went right to Christy. He could tell from the scrubs she was one of them so to speak. I am not ever sure if he knew if I was there. I was okay with that.

They started talking and it was like I had been sent to the kid table during a holiday dinner. I one time tried to say something, but I think the doctor raised his hand like do not interrupt the adult conversation. All I wanted to know was if they had a ball or something for me to do while they talked about my future.

I later asked Christy what he had said. She said that he told her that I was fucked. Hahaha. You know Christy did not say that. She never uses the F word. Well not often anyway only when she is really mad at me. Who would ever be mad at me? Do not answer that question.

Okay he did talk to me a little. I kid you not it was very little. I guess he needed me to agree to his plan. Christy was nodding her head so I said okay. The plan was to try a needle biopsy and if that did not work I would have surgery.

March 26th was the day they finally set up the biopsy at St. Joe Hospital. I arrived early that morning and met with the radiologist that was going to try to stick a needle into my fourth rib on my left side. Scans had shown that I had a mass, tumor, or lesions on both my left side and on my right side. The word choice, I guess take your pick. I have heard it called all three by different medical people.

They decided to do the left side instead of the right. They were more concerned with the left side because it was the most recent tumor/lesion to show up on the scans. The mass on my left side was very close to my heart and in the back of the rib bone up against my lung. It was going to be a little tricky for the radiologist to get that big ass needle, it was big, into the bone and not punch through it and hit the lung (bad) or the aorta (very bad).

The procedure was done with the use of a CT scanner. They would cut a little then place me into the scanner to see what they were doing and if it was going well. Take me out and do a little more work and then put me back into the scanner to see if things were good. In and out I went over and over. Yes I was awake during the procedure. They numbed me up and I really did not feel anything.

Parts of it were kind of funny. I had to laugh when they brought in what sounded like an impact wrench that you use to change a tire. I even felt my skin being twisted when they put that thing in me.

The doctor was trying to put the needle into me at an angle so that he would not go through the bone and into the lung or aorta. They had everything set up to get me into emergency surgery in case the needle slipped.

The only time it really hurt was each time he actually tried to penetrate the bone. The needle slipped off each time and I would move about a let out a yell. The doctor kept saying he was sorry and told him not to worry about it. I told him thatiIt did not hurt that bad, actually it did, but I wanted him to get it over with and be successful. He finally gave up.

What he needed to do next was to mark the rib so that the surgeon could take the correct one out. He actually put a treble hook into me. It was placed under the rib and a metal wire was attached to the treble hook. The wire would be several inches outside my body and the surgeon would follow the wire down to where he needed to cut. Fishing for ribs.

Now this is not how things were suppose to go. I had no idea that surgery would be done right after if the biopsy was not successful. I do not think the surgeon wanted it that way either. He was on a staycation with his kids. He had to come in on his days off to operate. Once that hook is put into you they have to operate soon. They wanted to operate the next day, but could not get me on the schedule. Wednesday would be surgery day.

I went to recovery after the attempted biopsy, but I wanted out of there. I was able to get them to let me go home. I was out of there by mid afternoon.

I needed to contact my supervisor, Travis, and let him know that I would probably be out of the office the entire week. The pain was actually bad. I was told not to move around so that the hook stayed in place. Like I was going to go on a run or something.

Christy had spoken to Travis and had told him what was going on. I still felt the need to communicate with him.

So I plugged Travis’ phone number into my phone and started texting him. Now in the past for some reason I have not been able to text him. So I started over from scratch and plugged his number into my phone.

This was the first message.

Now we like to have fun with one another and when he said this was not acceptable, I figured that I would play along. So I offered to work a half day. Like that was going to happen.

With his next response I started to get a little irritated and pissed. He was about to make my list.

It is common knowledge around work that I have a list of names that if I am ever told I have six months to live that you better hope you are not on that list. Travis worries that he is on that list. I keep him thinking that. He really is not on it. I like the guy, but he was getting very close to being on that list.

Then when he started talking about Christy I knew he would not go that far. I got to wondering who the hell I was talking to. I checked the number and the last digit should have been a five and I plugged in 6. I was not talking to Travis at all.

How funny. I really enjoyed the humor of the situation.

Travis can rest easy. He has not yet made the list.

Wednesday the 28th was surgery day. I had to be at St. Francis at the ungodly hour of 5:30 A.M.

Surgery was scheduled for 7:00.

So I am in a big pre-op room with probably a dozen people all waiting. I was in an area with a curtain drawn around me and all these people kept coming into the area to talk and then later prep me for the surgery.

The anesthesiologists came by and with him he had Doogie Howser 1. He explained that Doogie was going to be assisting him. I was thinking where the hell did they get this kid? I have clothes older than this kid. Yes my fashion is a little outdated.

Then the surgeon who was assisting the surgeon came by. The assistant was one of those white coats that had been in the room when the doctor was talking to Christy. The assistant to the assistant who was assisting the surgeon I had never seen before. He was Doogie Howser 2. I asked what his role would be. He was going to just observe. Good because I was going to object to Doogie 2 touching me at any time.

My chest was being shaved by a lady and some sort of jelly it seemed was being rubbed all over me. The room was ice cold and so was the jelly, and so were the ladies hands. Each time she touched me I could not stop from laughing. She told me that I was the only patient in the place laughing and that I needed to calm down or all the other patients would wonder what was going on. I could not help it.

I looked under the blanket and then I told the lady that she needed to call hospital security because I needed to make a police report. She asked what I was talking about. I told her that I came in here with a six pack and she had turned it into a jelly belly. She laughed and told me that everyone my age that leaves the hospital leaves with a jelly belly. That did not make me feel better.

So the doctor came by to talk, but by this time they had let Christy back to where I was and of course he was talking to her. That was okay because Doogie 1 had given me something before they even wheeled me out of that room and I was almost off to La La Land.

They wheeled me away and a few hours later I woke in recovery. I went home that night.

In a few days I will talk to you about the results.

Kevin

Chaos

Posted on by
5

I was sitting at the kitchen table drinking my coffee looking out into the yard at the bunnies running around and I was thinking of all of the things I wanted to do this spring. Playing ball, travel, running in races in which I will collect more t-shirts that Christy will try to hide or throw away, and of course trying to get well. I had many thoughts running through my head. I also thought about how chaotic and hectic the last month had been and if someone would ever be able to explain what was happening with Brutus.

I thought about what I needed to do to be able to get myself in shape to run the Zero Prostate Cancer 5k in about a month. I was wondering if my body had healed enough to even allow me to start running again. Last year I walked the race. I said that in 2018 I would come back and run. Not sure that is going to happen. I stopped running late last fall when the pain got too bad in my ribs. I am disappointed.

When I thought of what I needed to do in order to get back into shape I thought of my old trainer David Pace.

Dave and I have known each other since the 4th grade. We went to grade school, high school, and college together. We lived together a couple of years while at the University of Missouri in Columbia. We have a lot of history in which some has been pretty wild. I have many stories. I will not tell them here, at least not yet.

Several years ago Dave took a job in Wichita and he called me about where he and his family should buy a house. I told him that he needed to be in the Maize school district. He ended up buying a house two blocks from me.

When I was the most active with my running I would come home from work and go for a 3 to 5 mile run most nights. The weekends were for the longer runs or races.

Funny thing happened with those long weekend runs with Dave living two blocks away. I found myself leaving the house and jogging over to his place. He would invite me inside and grab two frosty mugs out of his freezer and two Bud Lights. Now that is what I call training. If it was before noon I would put a cornflake in the mug and call it breakfast. I do not think my times improved that summer. That is okay. I enjoyed the talks.

Dave and his family lived here several years. They moved away and now live in the KC area. My training has never been the same. Erin does not live far from Dave and Julie. I am planning on being in KC in a few weeks to see the kids. I might run, no I will drive over and knock on Dave’s door. Maybe drink a beer.

Dave has always been a very good friend. As I have been going through this cancer process his impact on my life has been even bigger.

He started by sending me cards out of the blue every so often that greatly helped pick up my spirits. Dave I cannot tell you how much those cards meant to me. He called so often that he at times was annoying. Just kidding Dave, but if you do know Dave as I know some of you who are reading this do, you know that he can be annoying at times. I love you Dave. You are one of my besties

When Dave would call I sensed that he was worried that he was going to lose a friend. He needed reassurance from me that I was not going anywhere. The problem was that I was also worried that he was going to lose a friend. Hell I am still worried he is going to lose a friend.

I felt the need to convince him that I was fine and that everything would be okay. I think at some point he finally started to believe. The problem was I did not believe what I was selling.

I also feel the need to convince each of you that I am going to be okay. Hell sometimes I start to believe it. In the short run I think things will work out. The long run, well who knows? In the long run I guess we are all dead. The problem is my long run is most likely shorter than most.

I try to stay as positive as I can. Being positive helps me get through the day. But I also have to face reality and at times it is very difficult to stay positive. It seems that for every step forward I have been able to take, I soon find myself taking two steps back. That has not changed. I get good news and soon the bad news follows.

I talk about Dave as an example of the support I have received since this mess started. Many of you have contacted me and let me know that I am in your thoughts and yes your prayers. I greatly appreciate that. Having that contact is what has kept me going, and will continue to keep me going. Thank you.

People who I do not even know have contacted me because they somehow found the blog. Some are cancer patients. I have exchanged emails with many of them and I am glad that they enjoy reading what I write and have found the blog helpful for their situation.

I have been called brave by some. I greatly appreciate the thought, but I am not sure that is the adjective I would use to describe me. You see I just do (most of the time) what my doctors tell me to do (they might disagree). I show up for my appointments. Show up for the scans and other tests. Let them cut on me when they have been able to convince me of the need. I just do what needs to be done.

Stupid is another adjective that some might use to describe me. At times that one is fairly accurate. I do not consider myself to be a stupid man, but I do at times play one in real life.

I have had contact with friends that I have not spoken to or seen in years. That has been wonderful. Sometimes I think that I have pushed too hard. I have at times said things I wished I could take back. I want to apologize for my stupidity. I would hate to lose contact with the people I have found. Sometimes I feel that I am running out of time.

My work family has provided me with so much support. I cannot find the words to explain to each of you what you mean to me. You have seen me at my worst. Each of you has done wonders for my spirits and your support has kept me going. Thank you.

Much has happened since the last post on March 18th. I had surgery and the surgeon talked me into another surgery, because he did not like the results of the first surgery. After I agreed to another surgery things changed, like they always do. I let the doctor know that I no longer wanted the surgery.

I have had more scans and tests. I have seen my doctors over and over. I am having another scan this week and another appointment with the surgeon to listen to him tell me one more time how he is going to help me.

I have a friend in town that is a cancer survivor and I was talking with him about all the crazy things that have been happening the last several weeks. He told me that when he was dealing with his cancer that his doctor told him that the best description he could give of cancer was that of chaos. Cancer never stays the same. Each day it is different. This causes chaos in treatments and in the patient’s daily life. Yes chaos is a good description.

Being a mush brained TV addict I thought of Maxwell Smart along with Agent 99 fighting the deadly spy’s from K.A.O.S. Brutus is an agent of Chaos and K.A.O.S. I need to call Maxwell Smart for help. Let me get my shoe phone.

I have found this past month to be especially physically and mentally challenging. My emotions have been all over and I find myself depressed at times. You will understand as this week unfolds.

I am going to do the post a little different than the past. I am going to try to write shorter posts and just post more often throughout a week or so. That means more work for Erin. I am sure she will not mind. I am going to give that a try because I am not sure anyone wants to slog through a 10,000 word post.

Let’s get started.

Kevin

Let’s Talk

Posted on by
18

It has been a few weeks since my last essay and I have a lot to say.  This might be a long one.  Go ahead and have a seat or lie down on the couch.  Put your feet up and make yourself comfortable.  Here we go.  Let’s talk.

I stopped taking most of my medicines in December and I feel so, so, so, much better.  Not sure that was the best move, but it sure felt like it at the time.  The nausea and extreme headaches have gone. I have not hugged the trash can in my office for weeks.

So when you ask me how I am feeling the answer will be “good.”  Now you have to understand that my good and your good are different.  I will always be dealing with side effects from surgery, radiation, and medications.  I have stopped taking the oral medications, but will continue with hormone therapy for a few more months.

What I am saying is that your good will always be “gooder” than my good.  Is gooder a word?  Well it is now.

 

 

(Everyday is a good day with Cammy)

I look normal.  I look fine.  But I deal with things that you do not see.  I have good days, bad days, and ugly days.  Most often my days are a mixture of all three.  I can be walking along feeling fine and the pain hits.  That pain can literally knock me to the floor.  We are working on trying to solve the pain issue, but for now I have tabled all of their recommendations.  I guess you can say that I am taking their recommendations under advisement.

I mentioned that I was no longer taking any pills.  The goal of the meds I was taking was to shrink any existing tumors and to slow cancer cell growth.  The numbers showed that the poison I was taking was working, but not as well as had been hoped.  The fractional drop in the numbers we were seeing in my opinion did not justify the side effects I was going through.  The cost vs. benefits did not add up.  So I stopped.

Christy pointed out that I was taking the meds to decrease the probability that the cancer will kill me.  She fears that my numbers will soon start to go back up.  She is probably right.  She has the brains in the family.  I am the looker.  You know the eye candy.  Shut up Erin!  I know that I am probably the only one laughing, but laughing makes me feel good.

Christy worries.  I understand that.  I think she would like to see me stick around a while.  We have talked at great length about the future and all the uncertainties of life.  She knows that what is important to me is having more life in my years rather than adding more years to my life.

I want to live not just survive.  Constantly being sick is not living.  Christy has a front row seat to what is happening.  She is a witness to what I am going through.  She understands that quality of life is very important to me and that future decisions will be made with that being the most important goal.

When someone in your family gets cancer everyone gets cancer, especially your spouse.  I try to comfort Christy the best I can.  I often grab her by the shoulders and pull her close to me.  I look into her eyes and wipe away her tears.  I tell her that everything is going to be okay.

So where do we go from here?

Advanced prostate cancer is a progressive, and life shortening disease.  When I say advanced cancer I mean cancer that is not curable.

I like to look at it as a currently incurable disease.  I am hoping that sometime in the future that some smart researcher will find a cure.  I hope that will happen.  I suspect that it will not happen in my lifetime.  I think amazing advances will be made to help people and maybe even help me, but I do not think a cure will be found anytime soon.

I mentioned that I am currently on a hormone therapy treatment.  It is called androgen deprivation therapy.  (ADT)

Androgen deprivation therapy is often used when dealing with advanced prostate cancer.  Androgen hormones are what feed the prostate cancer.  Testosterone is an androgen hormone.  Lupron is used to reduce the amount of testosterone in my body.

You see or hear commercials about men with low T needing to take supplements or drugs to increase their testosterone levels to get them to feeling like a man again.  Well I not only have low T I have no T.  Yup zero.

A side effect of the Lupron that you can see is the weight gain.  The suppression of testosterone causes weight gain.  I was told to expect a 25% increase in body weight.  I went from 155 to 185.  Right now 175.  None of my suits fit.  I had to buy new clothes.  Damn.

I took one suit to my tailor.  I refuse to take all of them.  I hope to lose the weight eventually.  Hopefully when off the Lupron in April the testosterone will recover and the weight loss will be easier.

I have to deal with several nasty side effects due to no T.  One of them being hot flashes.  Ladies I feel your pain or should I say heat.

My office door is near a rear exit.  Sometimes the flashes are bad enough that I will walk outside in the nine-degree weather we have been experiencing to cool off.  It helps.  Next time I will try to remember my key card so I can get back inside.  I had to walk to the front entrance to get back into the building.   It was a long cold walk.  Where is a hot flash when you need one?

With no testosterone in my body the ratio with estrogen is out of balance which causes the hot flashes.  I want to start taking off clothes, but that is not an option at work.  It might be an option when shopping at Walmart.

Men can be such bitches.  When asked about my treatments I have tried to explain the hormone treatments.  I no longer do.  I got tired of the girly man jokes.  The next guy who makes a girly man joke is getting hit with my purse right upside their head.  Take that bitch.

My next Lupron shot is scheduled in April.  I am going to tell them no thanks.  I will then be off all drugs.  Then we will see what happens.  I am so looking forward to being completely off everything.

I will then be tested every few months to monitor the growth of the cancer and when it reaches a certain level I will be back on treatments.  When I return to the treatments I will be sick again.

I asked my urologist how long I would have to continue this cycle of on and off treatments.   He gave me his best “Squints” impression and told me “for-ev-er.”

I will be on this cycle of treatments for the rest of my life or until they stop working.  Some patients stay in this cycle for many years.  I call them superstar patients.  They do not get better, and it might get worse, but does not become terminal.

Advanced prostate cancer patients will never beat the disease, but if treatments are working the disease will not beat them either.  They will battle it to a draw and will die of something else.

This is where I am now and where I hope to stay.  But I have to deal with the reality of my specific disease characteristics, and the treatment options currently available.

Based upon my age and disease characteristics at some point treatments are most likely going to stop working for me, and my cancer will go from being incurable to terminal.

Hopefully this will be many years from now and maybe additional new treatment discoveries might extend my life.  Unfortunately no matter how much I hope I might not become that superstar patient.  The disease might progress faster than expected.

I have asked my doctors how long I have.  The only answer they will give is that it all depends on how I respond to future treatments.  If the past is an indicator of the future I could be fucked.

Most people will not leave this earth without having to deal with some sort of adversity.  This is mine.  It is what it is and we will deal with it.

Some people refer to what I am going through as my new normal.  To me the “new normal” is like the phrase “journey” or being called a “survivor.”  I do not agree with any of them, but if someone else is comforted by these words then they should use them.

To me this is anything but normal so I refuse to say this is my new normal.  I want to work to getting back to the old normal, but I know that is impossible.  This disease has taken so much from me.

I have been mutilated, burned, and poisoned.  More will be coming.  This is not normal.  My life has been forever changed.

People ask what they can do to help.  Others do not know what to say.

There is nothing at this time that you can do to help.  Let me take that back.  The one thing you can do to help is to stay in contact.  Talk with me.  I want so much to talk with you to find out how you are doing and what you have done in the past and what you plan for the future.  I want to hear all about your vacation and talk about your children and grandchildren.  That would make me smile.

We do not need to talk about my cancer.  This is what I have to deal with.  You do not need to deal with it as well.  If you want to ask some questions that is fine.  I will answer.

I do not want you to feel that you have to come up with some magic words too console me.  That is not needed.

I only ask for your presence, and your time.  I am not contagious.

That would help me in my attempt to live a normal or new normal life.

When I think about it I have become a different or new person.  A New Kev so to speak.  Old Kev still exists, but has become hard to find.

New Kev has taken over and Old Kev is not sure he likes that.  Old Kev likes some things about New Kev.  Other things he does not like.

When I find Old Kev I am going to tell him he no longer has to be angry.  Even though he has much to be angry about, the anger does not help. He needs to let the anger go.  I will tell him to smile more and enjoy life.

I would tell Old Kev that he has been strong, but that his constant vigilance has taken a toll on him physically and mentally.  I would tell him that it is time for him to stand down and to let New Kev carry the load.  I would tell him that New Kev has his back.   I would tell Old Kev that I know that he is scared, and that is okay.

I would tell him that Christy wishes he did not use the “F” word so much.

I would assure Old Kev that the fight was not over.

When I find old Kev I am going to grab him by his shoulders and pull him closer to me.  I am going to look into his eyes and tell him that everything is going to be okay.  That is the least I can do for him.

Some people say that everything happens for a reason.  Well fuck, fuck, fuck, that!!!!

Wow!!  I think I just found Old Kev.  Let’s Talk.

Kev