Tag Archives: living with prostate cancer

The Calendar

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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?

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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”

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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

Hard Questions……Tough Answers

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6

“Dad, have they told you how much time you have?”

That is the question Amy asked me recently while she, Allie, and myself had a meal at a local restaurant. Before I attempt to answer that question let me rewind for just a moment and explain what has happened the last few weeks and how we had arrived at that moment, and that question.

A few months ago Amy asked me if I would be willing to do her taxes one more year. I told her that I could help her out, but that she needed to come home and bring with her all the information I would need. I also told her that she was going to sit with me and learn how to do this herself. Her taxes are so easy.

When she arrived in town we went out to eat. I never thought that I would ever have a conversation with Amy where the topics were death and taxes. More specifically my death and her taxes, but it happened. Death and taxes cannot be avoided. So they say. I am just going to try to kick it down the road a little farther. My taxes! I will send a check on April 15th.

So we first talked about her taxes. Amy changed jobs this year and so she worked most of the year in Kansas, but a small part of the year she worked in Missouri. I pointed out that she needed, or I should say we needed, or better yet let’s get down to what was really going to happen and that I needed to file state returns for her in both Kansas and Missouri. Amy looked at me and said: “Really?”  Yes little girl, really.

After taxes she had some additional finance questions. We talked about her 401k that we had set-up, and we talked about the benefits of a Roth 401k. You know it was just a regular night talking adult shit at Applebee’s. I kept my Mountain Dew intake down so not to get hopped up and go all Spider monkey on our waiter, Chip. Have you ever been kicked out of an Applebee’s? I will save that story.

Eventually the topic turned to my health. Sooner or later it always does when I am with one of the kids. You see Amy knew that I had recently had my usual tests completed and that I had seen my new doctor to review the results. After that visit the kids were told that things were going well. Amy took this opportunity to ask for more details. Damn.

What these recent results show along with the results from the past few months is that Brutus grows for awhile and then he shrinks. Shrinking is good. So for now I can continue to stay off treatments.

I shared with Amy over Mountain Dew, chicken nuggets, and fries what happened when I saw my new doctor.

Hold on a minute I know that at this point Cammy will have a question. Let me answer. Yes Cammy, I will buy you some chicken nuggets when I see you. Promise! (That boy loves his chicken nuggets.) I will take you to DQ for chicken nuggets, and a chocolate Peanut Buster Parfait!! I am feeling a little hungry right now. How about you? Okay back to the doctor.

I went over the results with the doctor, and I told him that most of the time I was feeling really good. We talked about the tumors shrinking.

I was sitting down and all of a sudden I stood up and I raised both arms into the air and I looked the doctor right in his eyes and I said to him, “I am cured!” This was a test.

You see Dr. U never liked talking about anything negative. I was hoping that U3 would be a doctor that would handle the tough times with candor. I do not want a doctor who wants to avoid the hard questions and not provide the tough answers. I was a little surprised about what happened next.

There was a moment of silence as I watched the expression on U3’s face change. I have not seen that look on a doctor’s face since Dr. U told me that I had been misdiagnosed and that my cancer was much more advanced then I had been told and that he had great concerns for my welfare or health or something like that.

U3 had that bad news look on his face. He might also have been wondering if I was a little delusional, or maybe no one had explained to me what I was up against, and now he was going to have to tell me. Or would he? That was the test. I will paraphrase what he said. Now this is very close to a direct quote, maybe a few words different.

The doctor looked at me and said: You have metastatic cancer. Your numbers could blow up tomorrow. I am glad that you are feeling well. Enjoy this while you can, because it will not last.

WOW and DAMN…DAMN…DAMN!

You think maybe a little too much candor? No, in my situation I think there can never be too much candor. I wanted to see if he would level with me. I wanted to see if he could be trusted. He passed the test. Thanks doc.

Now I do think that in the future I am going to have to talk to him about his word choice. That word “metastatic.” That has got to go. I do not like it. It sounds sooo bad. I am thinking that he should use the word that other doctors have used and that word being, advanced. You know you can be an advanced swimmer, advanced student, or have an advanced IQ. Which I am none of those, but I have an advanced disease. I like that better. We will talk. Moving on.

I asked the doctor if he thought I could remain off treatments for all of 2019. I asked because I already have a lot on my calendar. A couple of fishing trips, Table Rock Lake trip, baseball games, Alaska, a trip to the homeland and who knows what other opportunities will present themselves (like visiting the newest baby Heger in KC).

I guess one of them will not be a Missouri football bowl game. Damn NCAA. Maybe my anger should be directed somewhere else. Let me think about that a moment….Nope. Damn NCAA.

I really cannot think of a good time to ever go back on treatments, but especially this year. I do not want to sit on my butt at home. I want to get out and live. Looking at my schedule I do not have time to be sick.

I was looking at the doctor waiting on him to answer my questions about treatments. He did not look very comfortable. I could tell that he did not have the answer that I really wanted to hear. I guess I should not have asked such a hard question. He was having a tough time with his answer.

He looked at me and then said, “Maybe.”

We exchanged smiles. I knew what he meant. I know that he wants me to be able to cling to a little bit of hope. I will.

Before leaving the office an appointment was made for April. Then we will do this all over again. We talked about a new set of scans to be done in April. Damn.

As we go forward moving through time I know that things will change because nothing stays the same in the cancer world. They say that time marches on, but for me and people like me, our fear is that time is running out.

That brings us back to the question that Amy asked, “Dad, have they told you how much time you have?”

I have an answer to that question. The answer itself raises other questions.

I have talked to Justin and Erin in the past about Amy’s question. Justin and I have probably talked about it more in depth than I have with the girls. Amy has never really brought it up. I would imagine they have talked to each other.

They could ask Winston. Winston and I talk so he knows everything. Winston is such a good listener and is never judgmental. You can learn a lot from a dog.

Amy’s question is one of those questions where you think you might want to know the answer, but you really do not. If you do not know then you do not have to face it. The answer cannot hurt you.

I asked Amy a couple of questions to make sure she really wanted to get into this discussion. She did not. She decided that what she wanted was to think that I was going to be around for fifty more years. We left it at that. You see Amy is a lot like me. Let me explain.

I have a book sitting on my bookshelf directly behind me as I am typing. The book is titled, “Tuesdays with Morrie.” I read this book several years ago. Or rather I read most of the book several years ago. Many of you are probably familiar with the book and know that Morrie dies. I enjoyed Morrie so much as I read the book that I did not want him to die. I found myself refusing to read the ending. In my mind Morrie would stay alive. He would still be teaching life lessons. I later finished the book.

I did not want to confront the ending of Morrie’s story, nor does Amy want to confront my last chapter.

In a few months we will be entering the fourth year of my life with Brutus. When you look into what I consider to be my timeline we have gotten really deep into this process.

Erin, Justin, Amy, and Christy are the most important people in my life. They experience their own pain and have their own fears as they try to deal with what has happened and what will happen. I want to help them get through the last chapter.

Take a moment to read these words from Morrie:

“If you hold back on the emotions – if you don’t allow yourself to go through them – you can never get to being detached, you’re too busy being afraid. You’re afraid of the pain, you’re afraid of the grief. You’re afraid of the vulnerability that loving entails. But by throwing yourself into these emotions, by allowing yourself to dive right in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, ‘All right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.'”

Amy, when you are ready with your hard questions I have answers. Remember that we will hope for the best, but we must be prepared for the worst. It will be tough, but we will get through this together.

Love,

Dad

I came down with the flu recently, and while I was recovering Amy
and Allie took advantage of me not being myself and ganged up on me to
win several uno games. Good thing they were not sanctioned games.