Tag Archives: advanced cancer

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

Survivor?…Don’t Give Up

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I have been asked a time or two about how long it takes me to put together one of my essays. Most of the time it does not take very long, because often I have worked on the idea inside my head for quite some time before putting it on paper. It flows quickly.

Sometimes I am working through an idea and I just write. Throwing mud and seeing what sticks, so to speak.

I also do a lot of writing that you do not see, and probably will never see. I write about what I am thinking and it often just stays in a file on my computer. When I am gone my kids will have them to read. If Erin later wishes to put them on the blog that will be fine. They will be hers to do with what she wishes. This was going to be one of those pieces.

The idea for this essay came to me while preparing for the Zero Prostate Cancer Awareness 5k Run that my doctor’s medical group sponsors each year. The race is run in Wichita on Father’s Day weekend. I think the first time we participated was 2017. In 2018 I wrote some things down, but never finished. I was not sure I was ready to share. The essay stayed in the file to be kept for when I am gone.

I have come back to this essay a few times this year. The last time was in June. Looking over it and adding and subtracting. Each time that I wrote I could not get the piece completed to my satisfaction. I put it away.

Just a few weeks ago my girls and I ran the Zero 5k Prostate Cancer Awareness Run in Kansas City, Kansas. That again got me thinking about this essay. It was time to finish. I decided to take it out of the file.

This piece is a combination of several thoughts that I have edited and turned into one. It has taken awhile. Here we go.

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Today is Sunday, June 2, 2019, and it is National Cancer Survivors Day. I sometimes feel at odds with the mainstream thinking on the different verbiage used to describe a person with cancer and their “cancer journey.”

My thoughts are that often the words and metaphoric phrases used by non cancer people do not describe me or provide a very good explanation of what I am going through. Often these words or phrases try to minimize what people with cancer are dealing with.

“You got this!”

Well, no. Actually I do not. You can move along now.

I think I understand why these words and phrases have become so popular. They are easy. These are fallback words that people rely on when they do not know what to say. They want to turn a negative into a positive and cheer up their family member or friend. I really do appreciate the effort, but I feel they are often misguided. I think there is a better way.

I will in the future write an essay on talking to someone you care about with cancer. But that is not what this essay is about today. Well maybe it is just a little.

Before moving on to the main topic I will share with you one thing I think is very safe to say to a cancer patient. I would love to hear it myself actually.

“Kevin, your ass sure looks good in those jeans!!”

I have not heard that yet so you could be the first one to tell me. You could lie. I am okay with that. It would cheer me up, and of course make me laugh.

All kidding aside I would now like to talk about just one word that is used often in the cancer world. That word is: Survivor.

Each year that I go to the doctor’s office to pick up everyone’s race packets and gear I am asked if I am a survivor. Survivors are given different shirts so they can be picked out from the crowd. I am not real comfortable with that, but what the hell.

The first year I was picking up the packets that survivor question surprised me. I thought for a moment and I then told the lady that no, I was not a survivor, but that I hoped to be a survivor one day.

She then asked me some other questions and handed me a survivor’s shirt. She told me I was a survivor. She explained that everyone with cancer no matter where they were in their “journey” was considered a cancer survivor. I took the shirt.

I have thought about that conversation a few times. Hence the reason I have started and stopped working on this essay several times.

I realize that many people identify with being a survivor. I am not writing this in an attempt to change their self image. If that works for them, that is great. I will support whatever helps people get through the mental challenge of dealing with cancer. Many people have been cured. They are survivors. I am so, so, happy for them.

I do not feel like a survivor. I do not consider myself a survivor. If someone else wants to call me a survivor, I will not correct them. If I am asked privately I will let them know my thoughts.

To me, something happens and when it is over you have survived. If it does not end you have not yet survived.

I have survived many situations in my life. Sometimes when it is over I wonder how the hell I survived. But I did.

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One November night many years ago a business was being robbed just two blocks from where I was. When I arrived and I approached the business l learned that the robber had just fled and the manager of the business, who had just had a gun held to his head during the robbery, pointed in the direction the robber ran. I had an idea where he might be going. I had arrived so quickly that I thought I had a good chance of finding him.

I pulled down a street that ran in front of an apartment complex. I thought that might be where he was going. Sure enough he emerged from a dark field into the light. He wanted to get to the parking lot where his partner and getaway car waited. What he did not know, and which I later learned, was that when his partner saw me he drove off leaving the bad guy on his own.

I hopped out of my car to confront the bad guy. I forgot to put my car in park. So my car continued to roll down the street. So excuse me bad guy for a second while I hop back into my car and put it in park. Okay that is taken care of and now I can deal with you.

In the bad guy’s mind I was blocking his getaway. He had to go through me.

I was telling the bad guy what I wanted him to do, but he just ignored me. He was walking straight toward me. When he got close enough I reached out and grabbed him. The fight was then on.

Now this man was taller and heavier than me. But that is not unusual. Hell many people are born taller than I am.

When I grabbed him he punched me in my right eye. Thankfully that was before I wore glasses. You do see a big bright light when you get punched in the eye.

The fight I imagine did not last that long. To me it was a long time. We punched and kicked each other. I was having a hard time keeping control of him. What the hell am I saying? I never had control of him. I was just trying to stop him the best I could.

During this fight I knew that one of us was going to get hurt.

I do not know where it came from, but I heard a voice inside my head and this voice spoke to me.

“Kevin! You are going to get shot, but you will not die! Do not give up! Do not let this man get away!”

The fight continued. Then I heard the voice a second time.

“Kevin! You are going to get shot, but you will not die! Do not give up! Do not let this man get away!”

The bad guy started to pull away. I could no longer hold on. Then came the shots.

I do not know what was going through Christy’s mind when the supervisor showed up at our front door. He was there to take her to where I had been taken. He was/is a very good friend of mine. We are neighbors. He lives across the street. I think that made it easier for Christy to be with someone she knew. Thankfully we had family in town visiting who could stay with the kids.

I do not know what Mitch told her. I do not know what they talked about. After all these years we have never talked about that. Maybe one day we will.

In my line of work you live with the knowledge that bad things can happen at any time. It is not something that you constantly talk about with your spouse. We both knew the danger.

When Christy walked into the room she saw that I was okay. We hugged and kissed.

I survived that night. The bad guy died. I am not proud of that. I wish that it never happened. I wish that I could have controlled that situation better.

That confrontation had a beginning and an end. I survived.

I have had three cancer surgeries. I survived.

I have been through radiation. I survived.

I have had poisons injected into my body. I survived.

I have taken pills daily that make me sick. I survived.

But until I am told that my advanced/incurable/terminal cancer is cured then and only then will I consider myself to be a cancer survivor.

Until that happens I am just a man. A man who happens to have cancer, and like most men I am trying to get through each and every day the best I can.

Many mornings as I am putting on my suit or sport coat and tie that voice at times can be heard once again inside my head. This is what he says:

“Kevin you have cancer. But Brutus is not going to take you today. Do not give up.”

With that thought in my mind I straighten my tie and I smile at the man in the mirror. Winston tells me that I am looking sharp and then out the door I go ready to enjoy the day and live my life. Then I ask myself if Christy is happy. Because if she is not happy well you know how that goes.

Winston also told me that my ass looked good in my jeans so I guess you will not be the first to tell me after all. Thanks Winston.

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Recently I was again tested to see what Brutus was doing. If you remember last time I was tested that my doctor, U3, was concerned because Brutus was growing so fast.

I got the results on October 15th. They were not good. Brutus continues to grow at a high velocity. I was concerned what the doctor might say when I saw him the next day. I suspected he was going to tell me that it was time to go back on treatments. Damn!

I saw U3 on October 16th. We had a very informative visit. I informed him on what was going to happen.

I am not going to go into the details today on what happened during our visit. I will soon write an essay about what has been going on and what the next steps are.

The doctor did tell me that it was his advice that I go back on treatments. NOW!

I told the doctor NO. I told him that for now I was not going back on the poisons.   I gave him my reasons and he told me that he understood.

I did not lose that November night and I do not plan on losing to Brutus. As I have said before…how you live your life is how you beat cancer.

In a few days I will be on my way to Kentucky to see my Tigers pound the wildcats in a football game. I hope the Tigers left the team they took to Nashville in Nashville or else I am going to be pissed.

Win or lose it really is not the game itself that is taking me to Lexington. It is the chance to spend time with friends. I want to enjoy my life while I am still feeling good. My doctor gets that.

When I picked up our race packets before the October 6th 5k race in Kansas City I noticed that the forms they had there for me to fill out had a better description on how I see myself. The box I checked had patient/survivor. I think that is more accurate. I feel that there are many people that feel like I feel. They gave me a shirt to indicate that I was a patient/survivor.

After crossing the finish line at that race I was greeted by a woman who congratulated me on running the race. She then congratulated me on being a cancer survivor. It was the shirt. I said thank you.

As I continue down the road with Brutus I do not believe that calling me a cancer survivor is correct. But like I told the lady at my doctor’s office I hope to one day be one. What will be, will be.

No matter what happens I will just have to continue winning each day.

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I have been running basically the same course in my neighborhood for 28 years. I run in the grass because running on hard surfaces causes my Achilles tendinitis to flare up. I know where all the holes are. Occasionally I find a new one.

I run through a church lawn and one day I saw they had a sign in my path. I figured it probably said: Kevin, keep off the grass. It did not.

It said: Don’t Give Up.

Now when I run through the church lawn I reach down and I will touch that sign. I then say to the voice inside my head:

“I Will Not Give Up.”

Kevin

Cancer Patient

Looking Good….Feeling Good….Winning

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I walked into my oncologist’s office this past Wednesday, February 13th and after saying hello the first words out of Dr. O’s mouth were “Looking Good.” I was thinking, “Well I know that doc.” Then I realized that he was talking about my numbers.

My urologist, U3, checked my numbers in January and they were down. Excellent! Dr. O is checking me in February. The test results show that my nemesis Brutus is still with me. He keeps fluctuating. We will continue to keep an eye on him. I am not worried at the moment.

Dr. O appeared to be a little confused. He basically did not understand how I could be doing so well. He shrugged his shoulders and moved his hands toward the sky with his palms up.

So we talked. Let me get this straight doc. Since I am not on active treatment, like you had requested, you do not understand how I am doing so well. Maybe it is because I am not on active treatment. He smiled. He told me that for now we would continue with doing nothing. That is correct doc. I agree that is what we are going to do. I appreciate the consultation, but Dr. Bad Ass Brown already knew what was going to happen.

He asked about my pain. I reminded him that Dr. Bad Ass Brown does not have pain. Just discomfort. I told him that when the discomfort hits that I have been taking more medicine than he had originally prescribed. One pill just does not help. The increased dosage helps with the discomfort. Also the discomfort has not been as bad the last few months. So we were good there. I told him that I was feeling good, and that I was happy.

We set up another appointment. As I was leaving I wanted so badly to tell him that if needed I was available for other patient consults. Sometimes with humor I try to make a point. I decided to shut up. It was so hard not to make that statement.

“Looking good” is a common statement I hear from people that have not seen me in a while.

I do have to ask myself a few questions once I hear that comment. Does this person not realize that I am Kevin “MF” Brown and that I always look good? Right Sharon!?

Are they making the comment because I look good for a 59-year-old? Is the comment being made because I look good for a man with cancer? Bingo, I think we have a winner.

What people do not realize is that a person’s outside appearance tells them nothing about what other things that person might be dealing with inside their body. I look good. I have been feeling better. BUT, I am not well. I have cancer. For now it does not appear that it is going to change.

I will never get tired of hearing people tell me that I am looking good. It reinforces my idea that I am winning. I still have the upper hand. Brutus will just have to wait for his day.

Sorry, but I am going to interrupt this essay for a moment to discuss another deep investigative journalistic question that people seem to want to know. No, I do not color my hair. I cannot tell you how often I have been either accused of coloring my hair or asked if I color my hair. No I do not. Stop being a hater. If you look closely you can see some gray. Look closer.

I have been blessed with my grandfather’s hair. When he died he had a full head of dark hair with just a little gray. I inherited his hair. I also inherited his cancer. So with that in mind I would rather be bald without cancer than have dark hair with cancer. I would take a bald no cancer Kevin any day. ANY DAY! Now back to regular programming. Where do I pick up my Pulitzer?

During the summer of 2015 around 1,303 days ago I was sitting in my family doctor’s office talking about my tests results. He let me know that the results were not good. He did not need to wait for the results of a biopsy or any additional scans. He told me that with a number that high that I had cancer. A biopsy later confirmed the cancer, and the process began.

Since then some days have been good, some days bad, and some…oh well I was breathing. No matter how you feel the day still happens. With the passing of each day you have a sense of victory. You put those days together and it looks pretty impressive.

I am kicking Brutus’ ass. Look at the score. I took the picture Friday when the score was 1,301 to a big fat 0 for Brutus. I have won each and every day and I do not see that streak coming to an end anytime soon. Now some of those wins have not been pretty. I along with my team have made some errors, but I will take the “W” no matter how it comes about. Brutus, well he needs a closer to lock down the late innings. He has not yet found one.

As for my team we just try to play the best game possible waiting on our chance to score. Hit and run. Steal a base. We do whatever it takes knowing the importance of the moment. We have done well.

In his great speech Stuart Scott talked about living and dying with cancer. He said the following:

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live.”

With that in mind I know that I will beat cancer. I also realize that one day Brutus will probably go from 0 wins to 1.

Some say that when a cancer patient dies that they have lost their battle with cancer. The idea that you lose to cancer is wrong. How can you lose when the score is 1,303 to 1? You do not lose.

You win by showing Brutus that you are not afraid to live. You win by living the best possible life you can each and every day.

That is how you win. That is how an advanced patient beats cancer.

I have decided that I am going to try to change the focus of future posts. I want to move away from talking about how I am in a medical sense. No more talk of doctor visits and test results. I want to focus more on how I am beating cancer. I want to focus more on how I am living. More essays for my kids and grandchildren to have for future memories.

I will continue to write about cancer and my thoughts about the process. I just think for a while I want to stay away from talking about where I am in my process.   We will see how that works.

So in the future if you have a question on how I am doing I want you to remember this:

I look good. I feel good. I am winning.

Kevin

Hard Questions……Tough Answers

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“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.

Giving Thanks

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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

Why?

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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?

How’s Your Cancer?

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3

I was stopped at a red light not long ago and a car pulled up next to me. I saw that the passenger side window was coming down and I glanced over and saw my friend Boomer behind the wheel. We had worked together in investigations, but since his retirement a few years ago we have lost contact.

We exchanged greetings and he asked how I was doing. I told him fine. I had no idea what Boomer knew about my situation since we have not talked. The light was going to change soon and he was turning left and I was going straight. Our brief encounter would soon be over. This I suspect caused Boomer to get more to the point with his next question. He told me that he has been following my blog. He then asked, or a better description would be he yelled: “How is your cancer?”

He caught me off guard for a moment. Few people are that direct. I liked it. No sense beating around the bush. Let’s get to the point.

I told him that I was good, and that cancer thing was good. Brutus and I thanked him for asking.

The light changed and I told him that I would post an update soon. That was several weeks ago.

Before I go into more detail let me apologize for not posting sooner. I have been busy this summer. Work, the garden, dance, music, and travel have taken up most of my time.

I also have to admit that I really did not want to talk about it. I have enjoyed my summer and did not want to think or talk about cancer. Now is the time to again have a conversation about what has happened and what the future looks like. As I have said before, writing this blog is in a way therapy for me. It forces me to logically organize my thoughts. It helps me make decisions. When I write it makes me face reality. These summer months I have not wanted to face reality. I wanted to run, jump, and play. Reality sucks! Also things have not gone as I had planned. That seems to be a recurring theme.

Now we are getting closer to my next round of tests which should provide feedback on the choices I have made and will have a big impact on the decisions I must make going forward. These conversations even if the conversation is just with me help. As I write my way through a problem I am better able to make decisions.

Sometimes I do not understand what is happening. Sometimes my medical team does not understand what is happening. I have to remember that they are practicing medicine. It is frustrating when so much is on the line. So much is at stake.

Each person’s cancer is different which is why it is so difficult to treat. Each person faces this monster in a way that is right for them. Who is to say who is right and who is wrong?

I have learned in the cancer world that many problems are not yet understood. No one will ever be able to answer all questions or understand why something is or is not happening. Sometimes doctors do not agree. I have learned to move on and stop banging my head against the cancer wall. The answers will come some day. But for now it is what it is.

The results from my surgery on May 22nd really did not help in explaining what was happening, and tests that were completed after the surgery in June were not good. I went into the June test feeling really good. Most of this summer I have felt better than I have in years, I am happy.

Since I have been feeling so good that also means that Brutus was enjoying his days. You see when I felt bad from the poisons that they gave me Brutus also felt bad. Parts of him were killed and the other cancer cells had gone dormant. He was beaten down pretty good for awhile, but so was I. I would rather never feel that way again. The test results in June showed that Brutus is starting to grow stronger. Damn.

I have gotten a little out of a logical order on what has happened the last few months so let’s go back to my last post and make some sense out of this chaos. I left you hanging last time. Let’s fix that.

Let me go back to when I arrived home from my fishing trip in Colorado and the next day, May 22nd, I was to have surgery. I will start there.

It was the night before my surgery and all through the house not a creature was stirring not even a …..wait a minute that sounds a little familiar.   Anyway a mouse might not have been up, but I sure was. I could not sleep and I was up almost all night. I had a lot on my mind. I went to bed around 2:30, but still could not sleep. I got up at 4:30 to go to the hospital. I guess I really did not need the sleep. I was going to be sleeping all day after surgery.

Lying in bed I was thinking about how long I was going to have to stay in the hospital. I was hoping to go home the same day as surgery. The doctor’s staff thought that might be possible, but I was more likely going to be staying at least one night.

I was also thinking about how I got myself into this position? I really did not want the surgery. Dr. O wanted me to have the surgery. Christy thinks that I should listen to Dr. O.

I was trying to figure out how to turn this into a positive. I said to myself: Kevin, I call myself Kevin when talking to myself. I tried Mr. Brown, but that does not sound right. Kevin, you have got to figure a way to use this to your advantage.

I decided that I could play the surgery card when discussing future drugs they wanted me to take. Yup, that is what I decided. I will be the farmer’s pig one more time to avoid having to take drugs. I am going to tell them that I did your surgery thing when I did not want to have surgery. Now you want me on drugs and I do not want them. So now we are going to do what I want. We will see how that goes.

So we get to the hospital and they are prepping me and a male nurse is there to shave my chest. He sees the surgery scar from the last time, and we talk about the last surgery. While talking the anesthesiologist (had to look up how to spell that) shows up. Yes, the same one from my rib surgery in March.

He wants to know why I was there again. I had to explain that my medical team, Curly, Moe, and Larry did not have the answers they needed. They needed evidence so today I was having another rib removed. I could have said something funny to him like hoping I make out like Adam, and wake up with an Eve, but at my age I do not need that drama.

My surgeon then showed up and Dr. S spoke to Dr. A. Typing Dr. A is so much easier than typing anesthes….you know.

They were a little lazy at the last surgery prep. They only shaved my chest on the side where they were cutting me open. I looked a little funny. I asked the man to shave the entire chest area this time. I told him that I did not want to look weird for swim suit season. He laughed then shaved not only my chest, but my stomach area as well. Good job.

While shaving he wanted to know my name. I told him Kevin Brown. He wanted to know my middle name. If I had been thinking I would have said “MF.” I did not say that. Not on the top of my game, probably from lack of sleep. I told him my real middle name. I never tell anyone my middle name. The name comes in handy for one reason only. There are thousands of Kevin Brown’s in this world. I can assure you that none of them have my middle name, and no I am not going to tell you what it is. If you are buying the beer I might tell you.

Anyway I told the nurse. I then told him that if he ever told anyone else that I would have to kill him. I don’t think he thought I was serious. He could make my list.

So I get wheeled into the operating room and Dr. A wants my name. I tell him Kevin Brown. I hear the nurse yell out, “His middle name is ****, and if you tell anyone he is gonna kill you.” I laughed. That is the last thing I remember until waking up in the cardio thoracic intensive care unit. I had never heard of such a thing. I was there I guess because I had thoracic surgery, and something about a partial lung collapsing. Hell I do not know. I have never fully understood why I was in the ICU, but I liked it there.

I have never been in intensive care before. They take really good care of you there. The only problem was people constantly in the room ever few hours all night long. I had to have pills ever few hours. They gave me breathing treatments every four hours. I could not get up and walk around without being hooked up to an oxygen tank and wheeling that around with me. But anytime I needed someone they were there. Hell they were there in my room even when I didn’t need them.

After about a day and a half I was moved to a regular room. I still had to be on oxygen. It was a big difference on a regular floor. Hell I could not get anyone to do anything. I waited over an hour for some water. I got up with my tank and walked way down the hall got the water and made sure I walked past the nurse’s station. They asked if I needed anything. I told them I could have used the water an hour ago when I asked for it.

I have another bitch as well. When I was in intensive care the nurses made sure I got ice cream. It was great. I go to the regular floor and I tried to order ice cream and I was told that had to be approved by my doctor, because it was not heart healthy. Well fuck that!! Hell I have stage IV cancer a little heart attack does not scare me. I would welcome a heart attack as long as it takes me quick. Sure as shit beats dying from cancer. I guess dead is dead. I still plan on being shot by a jealous husband. Anyway after making a complaint to the Geneva Convention I got my ice cream. It was not as good as what I got in intensive care. Damn.

So I get sent home and what I thought would be at the most a week off from work is now going to be longer. Someone was sent to my house to place a big oxygen pump in my basement. A very long tube was connected to the pump. It could reach anywhere in the house. They told me that I had to be hooked up to the oxygen machine at all times. I could not even sleep without it. I had this little gadget that I would put on my finger and it would tell me how my lung was doing.

After I got home I took a shower and I started getting dizzy and feeling weak in the shower. I realized that I had taken that damn oxygen tube off. So I grabbed it off the counter and put it on. Then felt better. They were serious about that oxygen shit. Imagine that.

After about a week my lung had recovered and I no longer needed the oxygen. I had all of these tanks around the house, and I was supposed to take one with me if I left home. Finally I got the company to come get them. They looked like missiles. I thought that I was going to blow the house up.

So let’s move on to the test result from my rib. Once again Christy knows and works with everyone in the pathology department. The guy in charge again looked at the rib as well as another doctor that Christy likes, a different doctor from the last time.

No cancer was found. Which you would think is good news. I took it as good news. But that brings up the question of what the hell was it? The pathologist could see the damage. Last time the surgeon saw the damage, but he had tore up the rib so badly that the pathologist could only check for the presence of cancer cells. They could not see the damage that the surgeon had found. This time the pathologist could see the damage. The doctor told Christy that it looked like cancer could have caused the damage, but no cells.

I will take that, because my thinking was that I now have a better case for going off all drugs. If the rib had tested positive then that was not going to happen.

So the first doctor I see during “Kevin’s Summer Tour of Medical Bullshit” is the surgeon. He says “You know that the test for cancer was negative, correct?” He knows that I have the hook up. I tell him that I did know that.

He is sitting on a stool just a few feet from me and he was looking straight at me. He then looks down to the floor and his shoulders droop. He then looks up at me again and I can see in his eyes and in his face that he feels that he has failed me.

He has believed from day one that the cancer had moved into my ribs. He tells me again that what he saw was cancer damage. I told him that I understood the situation. He again looks away from me. Then there was silence. We both knew that something bad had been going on or was going on inside my body. It was just not yet understood.

When he again looked at me the cancer conversation was over. We knew that there was no reason to continue talking about it. We then talked about how to put the medicine he was giving me onto the incisions to keep germs out. He showed me how to keep it covered so I could go on my upcoming lake vacation. He said lake water better not get into the wound.

Christy works closely with many of the cancer doctors at her hospital. She has worked with my surgeon on several occasions. Therefore that makes me part of the hospital family so to speak. Dr. S believes the cancer has spread and without evidence he feels that I will not be treated correctly. I understand that.

I want Dr. S to know that I greatly appreciate all his efforts. Even though there were times we did not see eye to eye I greatly respect him. Sometimes things are a mystery. At least until they are not. Time will tell.

So the next doctor I see is my oncologist. First thing that Dr. O does is thank me for having the surgery. He tells me that it was needed to help answer questions. I am thinking well what questions did it answer? I did not ask. You see I really have gotten to the point where I do not care anymore. I just want to move on.

Several months ago I was in a bad way.   I was in his office and I was not happy with how things were going and I raised my voice a little to let him know my dissatisfaction. He made a statement that I will not forget. He said, “My job is to help you manage your cancer. I have not been doing a very good job.” I thought to myself, no shit Sherlock as I was walking out the door. I did not say it out loud. I wish I had.

The words he used that day have meaning. He did not say that he was there to cure me. He did not say that he was there to help me have a high quality of life. He was there to help me manage. If he was there only to help then that must mean that I am in charge and I was going to make a decision that he was not going to like. No more surgeries and no more drugs.

It was not a popular decision. The biggest reason being the tests that I had a week before seeing Dr. O showed that my cancer was no longer dormant, and that Brutus was alive and well and growing. Being dormant did not last very long. That is very bad. Damn.

We had this discussion in March. He kept giving me reason why I needed to continue the drugs and never come off of them. I just kept telling him no. I will talk more about my reasons on my next post.

During the March meeting we had a very good discussion and I never raised my voice. Honest. He finally understood that I was done for now with the poison being injected into my body and taking pills.

Now I am not suicidal, at least not yet. I know that at some point I will need to be back on the drugs. I know that if I am not on the drugs that the cancer will kill me sooner. I just want for as long as possible to not feel sick. You have to recover from the disease then you have to recover from the treatments.

Christy was not at that appointment in March, but she was at this one. I was concerned that they were both going to gang up on me about the drugs. You see Christy does not like my decision about coming off the drugs.

She had gone to the kids and spoke to them in an attempt to get them on her side. I knew that was going to happen. I had this planned out for months. I spoke to each of my children in person before she got to them and told them what I was planning on doing, and why I was doing it. The kids understand why I am making this choice, and for now they support my decision.

Christy let Dr. O know that she felt that I should stay on the drugs. I thought oh boy here we go. The doctor has an ally and he is going to run with it. I was pleasantly surprised that did not happen. He knows my wishes and he did not throw me under the bus.

He looked at Christy and told her that I did not want them. That ended the conversation about the shots and drugs. I will remain off all medications for now.

He did tell me that he was concerned about my rising PSA numbers and that he did not want that number getting very high. He gave me a number that he felt my PSA should not be allowed to rise above. I thought that number is way too low, and I am going to be at that number in no time. There is no way I am going to agree to that, but I did not say anything. That will be a discussion for another day. I have already started planning for that day.

So from what I can tell Dr. O still does not have the evidence he needs to prove to him that the cancer was or is in my ribs or will return to my ribs. Whatever, it is what it is. I will deal with future problems when and if they occur. He wants me on drugs, but for now he will let me think that I am in charge.

I am scheduled to be tested and maybe scanned in September and October. We will see what happens then.

For now the cancer grows and I understand the risk I am taking. I will have more about the drug issues and the cancer growth in the next post.

The last doctor I saw was the wise old urologist, Dr. U. He had told me during our last visit that he believed the cancer had spread into my ribs. Last time we talked about the need for the second surgery. He told me that they would not find anything. When I saw him in June he did not know that I had agreed to have the second rib surgery.

You see my doctors do share information such as lab work and who knows what else. Unfortunately they do not talk. I wish they did.

When he found out that I had the second surgery he was a little upset. He flat out told me that I did not need the other doctors. He said that he alone could take care of me.

I let him know that I appreciated his concern, but for now I was going to keep things the way they were.

With multiple doctors I am able to learn about more options. I am then able to cherry pick from each doctor. Dr. U has a much higher PSA number in mind when he talks risk tolerance than Dr. O’s. I like that, because I think that it at least lets me know that I am not being totally irresponsible. That a well respected doctor agrees with me on how I want to handle my treatments.

But I cannot ignore Dr. O’s thinking on what needs to be done. He is a very smart man. You may have seen on the news or read in the paper the past few months about a new study involving breast cancer patients in which it was determined that women with the most common form of early stage breast cancer could safely skip chemotherapy. Well Dr. O was one of the researchers and is a co-author of the study. I think I will keep him on my team.

Going forward from here I am concerned that my numbers are going up. That should not be happening. I am concerned that very recently I have again started having discomfort in my ribs. I have tried to tell myself that the discomfort is caused by having been so active this summer. I know that I am lying to myself.

Overall I am happy. I have had a great summer, and I hope you have as well.

Well that is my update on how Brutus is for now.

We will see what tomorrow brings. Remember life is what you make it.

Thanks for listening. Okay, technically reading.

Kevin

Let’s Talk

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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