Are You Sure About That?

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

5 thoughts on “Are You Sure About That?

  1. Kevin, thank you for sharing your story. It certainly gives me a different perspective on my life and how I live it. I am glad to call you my friend. Enjoy life my friend.

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  2. Kevin, you are the most inspirational person I know. I include you in my prayers and hope that the new immunotherapy that will help you is right around the corner. I enjoyed our Kentucky trip and look forward to seeing again. Take care Kevin.

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  3. I’m giving this post a like because you have spunk Kevin. You are enjoying visits with friends, soon you’ll be chomping on birthday cake with Camden, planning upcoming trips – you won’t let this Brutus bully beat you up any more. Your attitude is what will keep you writing to Camden for a long time and carrying on. I don’t blame you for not taking the drugs and feeling sick and nauseous all the time. Who wants to feel like that? I wish your doctors had been more diligent monitoring your PSA level when it counted and you could have nipped this in the bud. They should not be able to ever look you in the eye again, because they have failed you. Others will benefit by the info you have given us today. I learned a lot about prostate cancer in this post – more than I learned from the handouts my boss sent to me after his consultation with the Cleveland Clinic before the radiation seeds were implanted on November 14th. I think he left out some details which I learned tonight. I wish you luck in your journey, medical wise and road-trip wise. Please keep the faith, sometimes it’s all we’ve got. – Linda

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  4. Kevin, so good to hear from you, and you cannot imagine how special you are to all of us…a blessing and a reminder of what is important in life, no matter how much time we have…and none of us know that timeline! Your update, and the way you are taking your situation head on with a smile, a ice cream, and an occasional speeding ticket (its the red sports car, really, not you!)…are a true testament to all of us. I am sure you have seen the piece “What Cancer Cannot Do” (google it, Boomer), and you are a living inspiration of that.

    Praying for you, Christy and the family…thinking of you this weekend, as your beloved Cardinals have their Winter Warm-up, and looking forward to seeing you again!

    Steve

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