Let’s Talk

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

The gift

I have to admit that I have been a little depressed this Christmas season. This year things have not gone as I had envisioned. It has been hard at times to keep a positive attitude. Some days it is impossible. Cancer sucks and it beats you down making it hard to even have the desire to get out of bed. But we continue to place one foot forward and then the other. We keep going, but life has still sucked. Maybe things will get better, but it looks like not anytime soon.

I met with my doctor on December 14th to go over my latest test and to let him know how I was feeling. I had to be honest with the Doc and I told him that I felt like shit, but that I was willing to continue being sick if the treatment plan was working. I learned that the remission we were hoping for by using this experimental drug protocol was not going to happen.

Months ago when we returned from our vacation in Seattle the plan was that I would start chemo. Once back I had another meeting with my doctor and he had another alternative he wanted me to consider. A new clinical trial had been completed showing promising results with patients with stage 4 prostate cancer. Patients like me with some of the same characteristics as my disease.

It was a small study, but showed promising results. Some of the patients had gone into remission. He estimated that the probability that I could go into remission at 25%. I understood that the probability of a remission with chemo was less.

I thought so why are you asking me which one do I want? WTF Doc we are going for a remission screw chemo. I never wanted to do chemo anyway.

He then explained that the treatment was not FDA approved and considered experimental by insurance companies. The drugs cost $10,000.00 a month and that most insurance companies would not pay for it.

I told him to submit it to the insurance company and if it was not approved then chemo it was.

Well everyone about shit their pants when the insurance company approved the drug. Not me. I do not shit my pants. I do piss my pants, but do not shit them.

I went on the drugs.

On December 14th I learned that I was not going to be one of the 25% to go into remission. The numbers were not where they needed to be, and the side effects I was experiencing were too severe to continue.

The last four weeks using the drugs had made me very sick. October and November were not bad, but December was kicking by butt. The side effects were getting worse. I was taking more pills to combat all the side effects the drugs were causing just so I could continue using the drugs. I was taking more pills to help control the side effects than I was to control the cancer. Still it was worth a try.

I still have the medicine inside of me from my ADT shot therapy. Good old Lupron.   No more Zytiga at this time. I am down to one pill bottle in the morning and evening instead of five. I still take Percocet when the pain gets really bad. Hate that shit, but it does help me sleep.

Oh I did find out that one of those pills I was taking was for the dog. Hey early in the morning when it is the first thing you do is get out of bed and walk downstairs still half asleep all I do is see pill bottle then take pill. The pills for Winston were also on the table. The Tiger Dog pills must have been the only pill working. I kept scratching the front door then went outside for a few seconds then back inside then out and back several more times. You get the picture. (Just Kidding – Maybe)

So no remission along with being sick adds up to the blues. My spirits did change on December 23rd at 9:30 P.M. That is when Amy Brown walked through the front door. She announced that she wanted to go look at Christmas lights. I really had not been in the mood for driving around looking at lights. I was in a certifiable “Bah Humbug” mood, but Amy usually gets what she wants. The baby you know. So off we went.

We went to Candy Cane Lane which is an area of houses that we had been to many, many times in the past. This time was a little different. I decided to park the car away from Candy Cane Lane and we walked there to look at the houses. Yes it was very cold, but the wind was not blowing. Oklahoma blows you know. That is why we normally always have a south wind. Not tonight. Thanks Oklahoma.

So we walked around and were able to spend much more time looking over the decorations. No cars hurrying us along. Just had to dodge a few of them, but hell I can dodge a wrench. (Patches O’Houlihan)

We talked to people in their cars and spoke to a few home owners and talked about their decorations. One house had lights reading, “Happy Birthday Jesus.” I never found out where to go to get my treat bag.

We took pictures, and talked and laughed. This was a moment that I will cherish. This was fun times with my Amy. The blues were gone. No more feeling sorry for myself.

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Over the next couple of days I enjoyed time with Justin, Amy, and Allie. Amy introduced a new game to the family called ‘The Chameleon.’ I am now the South Central Kansas Chameleon Champion. Okay, Okay maybe Amy is, but she cheated.

Christmas Day was a little different as well. I was going through Cammy withdrawals, and the blues were trying to sing again. Then the snap shits started.

I was sitting at the kitchen table drinking my coffee when the first snap chat arrived. I was able to watch Cammy playing with his gifts from Santa. Let me tell you he you really made out in the gift department from Santa and everyone else. He could open his own store. I guess that is to be expected when you are the first and only grandchild on both sides.

When the snaps stopped and he took a break from playing Cammy called making it face chat time. Is that what you call it, face chat? Well that is what I am calling it today. One word or two? Hell I do not know. Moving on.

I am sure Erin dialed, but when we spoke Cammy was not going to give up that phone. He wanted to show us everything that Santa had brought. He started walking around and yes Nana and I got a really good look at the floor (Vacuum Erin). Also had a good view of the walls, and ceiling. It also made us a little bit dizzy at times.

During all of this he was actually able to show us what Santa had brought and he told us all about it. He also hung up on us two or three times, but that is normal.

Cammy I so enjoyed the snaps and face chatting and attempting to have a conversation with you, but I want to tell you that as you get older that you will learn that the best gifts that you will ever receive will not be found under the tree. They might also appear at other times than Christmas.

I did not bring it up when you called. You are only two years old, and dah, would not understand. When you get older and are reading this I think you will understand. But now as a small child it often does revolve around what is under the tree or in the corner tucked away. Right, Ralphie?

I do want to take this moment Cammy to tell you about one of the best gifts I ever received in my life. His name was Grandpa Albert. We were very close and he was more of a father to me than my father ever was. I spent more time with him than any other man. As a small child he took me to St. Louis many times to see the Cardinals. He is responsible for my deep devotion to the Cards. I hope to pass that devotion onto you.

I think of him often. Grandpa died 31 years ago. I still miss him. The sadness I feel after all these years is still there inside me. It will always be there. I do not care if someone tries to tell you differently my experience is that you never really get over the loss of someone extremely close to you. You just learn to live through it.

Cammy I have found myself thinking about Grandpa often this Christmas. He was my grandfather and I am yours. I hope that as he looks down on us that I have made him proud. I would like to think that I have.

Christmas night I asked Amy what was the best gift she had received this year. She told me that her best gift was looking at the Christmas lights and spending time with me. Our moments!

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Everyone needs an Amy. Everyone has an Amy. We just need to open our eyes and our hearts and live and love in the moment we find ourselves.

Your moments are all around. Sometimes we are just too busy to see them.

Your moment might be taking a hike or bike ride and sharing that experience with family or friends.

Finding the man or woman of your dreams and telling that person each and every day in words and/or deeds that you love them.

One day Camden you will find your best gift somewhere other than under the tree. Amy gets that. I get that. Someday you will too.

Live and love in the moment. Cherish your experiences. Make them count.

Love,
Papa

The Dance

“To dance, put your hand on your heart and listen to the sound of your soul.”
~Eugene Louis Faccuito

Dancing has always been a big part of my girls’ lives. Both Erin and Amy were dancing around the age of four. By the time they reached softball age I could not rehabilitate them and turn them into ball players. Amy was busy picking dandelions in the outfield, and when she wore the catcher’s gear she could not walk, but my how cute she looked. Erin caught the ball with her mouth one too many times, and decided softball was not her thing. Their mom had won. Dancers are what they would be.

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I have loved watching them grow into beautiful, graceful dancers.   I was eventually fine that dancing was the athletic endeavor they chose, and I have always said that they get their dance ability from me. I have always loved to dance myself and have been known to break out a few moves now and then.

Dance became a part of my life as well as theirs. I enjoy dancing wherever and whenever I can. Weather that be in a class, such as my adult tap class, at a wedding, going out with friends, or just in my basement. I have found dancing to be very uplifting.

You lose yourself in the music. You listen to the keyboard, the drums, the guitar, and the music will enter your body and capture your soul. Then you move. Then you dance. This is when I forget that I am sick.

There is also another kind of dance that I am very familiar with as well. It is what I will call dancing around a subject. It is kind of like when I am interviewing someone and they ask me if they are going to jail. I may have known they were going to jail the minute they showed up to my office, but am not ready to tell them…ball change. Or I might not really know yet if they are going to jail and need more info from them to really answer that question. The dance continues…shuffle…hop…flap…ball change.

Then there is the dance of my medical team. It can be hard sometimes to get a straight answer. Sometimes I have to lead other times follow, which brings me to the call I received from my doctor’s office about my lab results several weeks ago.

A Tuesday afternoon I was in an interview when I saw my phone light up and that the call was from my doctor’s office. I knew that the call was about my lab results. On the voice mail Teresa asked me to call.

Surgery and radiation are the curative treatments for my cancer and I have had both, and I am on a lot of drugs. It had now been over two months since my radiation treatments ended. So at this stage of my treatments they should not find any evidence of disease. Any other news would be bad.

I called back around 4:00 and Teresa gave me the numbers. I was not disease free. The dance began.

She then talked about how much the numbers had improved and how things would hopefully get better. I wondered if she knew the significance of what she was telling me. Did she realize that the information she had just given me told me that my cancer was not curable? Was she deflecting my questions because the answers I was seeking should come from my doctor?

She was continuing to talk as positively as she could, but I was no longer listening. My mind was somewhere else. I thanked her for the information and I hung up the phone and I thought ‘Oh no Mr. Bill.’ (Kids you will have to Google Mr. Bill SNL)

I then cleaned off my desk, turned off my computer, locked my office door and told my partner next door that I was leaving early for the day. I then left the building.

As I drove away I had many thoughts. I thought about our trip in March to see a cancer specialist in Illinois. This was after surgery when they told me that the disease had spread, but they were not sure where it had gone. I needed a special scan and the machine was only in a few hospitals in the country. We tried Mayo in Minnesota, but they could not get me in for a few months. We did not have the time to wait. A cancer hospital in Texas wanted me to commit to having my treatments at their hospital. I said no. We were able to find a hospital in Illinois with the machine and we traveled there.

The scans revealed that the cancer had spread to several lymph nodes in my pelvic region. They also noted concerns for the cancer having reached lymph nodes outside my pelvic area and into my stomach. The radiation oncologist wrote in his report that several of the lymph nodes were highly suspicious for metastatic disease, which would mean incurable. I did not want to think about that.

The scan was able to tell us where my radiation treatments should be concentrated with the hope that it would kill the cancer and cure me.

I also thought about the day I met with my current surgeon for a second opinion before surgery. I remember the doctor examining me and he told me that I was not stage 1 as I had been told by the other doctor who I fired. Rather I was at least stage 3 or worse. He looked at me and said that he had great concern for my welfare.

I knew when he told me stage 3 that it was very hard to cure stage 3 prostate cancer.

So what I learned from Teresa that day really was not surprising. Actually in the back of my mind it was expected.

The lab results told me that any future treatments would not concentrate on curing me but rather on prolonging my life. To give me more time, to help me hopefully into remission. Hopefully the disease will be treatable and manageable. Time will tell.

I have not really shared the information you have just read with many people. I have become a very private person over the years. I am very protective of my family’s privacy. I think it is because of the job that I do. Hell I do not even have a goddamn Facebook page. (Until a few hours ago. Erin set me up. Have to see how that works out.)

I find it very odd and scary that I am sharing my experience with so many people now, and in this manner. But I have found that putting my feelings in writing has helped me deal with what is happening and allows me to think deeper about this process. I guess if I am going to write it then someone ought to read it.

When you read this please do not feel sorry or sad for me. I do not need or want sympathy. What I need is to feel your positive thoughts and love. When I see you I want to see a smile and I will take a hug. I need more smiles and hugs.

I do not know what the future holds, but I do know this:

I WILL NOT ALLOW FEAR AND DEPRESSION TO TAKE OVER MY LIFE. WE WILL GET UP EACH AND EVERY DAY AND MAKE IT THE BEST DAMN DAY POSSIBLE. THAT I PROMISE. I AM SORry for yelling. I have calmed down now.

And by the way if anyone ever asks you what Papa Brown did after he left his office that day he got those shitty lab results you can tell them that I went out and did what I do most Tuesday nights — I went dancing.

Kevin
Optimist
Pessimist
Trying to live in reality

MIZ

I’m Ready

‘I’m Ready’, that was the name of the song that Pandora decided to play during my usual morning workout. It was sandwiched between a Linkin Park song and one by Breaking Benjamin, which are my normal morning pump up jams.

 

Why did Pandora pick a song by Nikyee Heaton? A woman I have never heard of nor have I knowingly listened to her music.

 

But instead of changing the song I wiped the sweat from my forehead and found myself listening to the words. I tried to figure out why Pandora had chosen this song for me.

Did Pandora know that I have stage 4 cancer? Did Pandora know that prior to turning on the music for my workout I had been in the bathroom vomiting?

 

Not sure if my morning nausea is caused by my medications or from stress. I guess it does not matter.

 

Did Pandora know that after my surgery my post op tests were bad? I was told that the surgery was not as successful as hoped and later scans showed that the disease had spread. I would need radiation and drug treatments.

 

Did Pandora know that my radiation treatments were over and that today I was going to my doctor’s office for post radiation testing? Did Pandora understand the anxiety I had been feeling the last few days? Did Pandora realize that I was not sure if I was ready to deal with cancer today?

 

I do not know what Pandora knew, but I do know that song she chose for me was about resilience, and that was something I needed more of that morning.

 

I listened to the words, but what caught most of my attention was the song title on the TV screen. I’m Ready. But was I? It was as if Pandora was challenging me to get ready to face this disease another day. Challenge accepted!

 

I started moving faster on my elliptical, pumped out more pushups, and threw around that 100 pound dumbbell with more gusto. Okay take away 90 pounds from the dumbbell. Once finished it was time for a shower and then a drive to the other side of town for my test.

 

When I arrived at my doctor’s office that morning I spoke to Teresa. Teresa would be taking my blood sample and we talked about the results of my last test as well as the many different treatments I have had since. We talked about how those treatments and the drug therapies would hopefully have a positive impact on today’s test. We spoke about the type of results we might expect.

 

I talked to Teresa about the anxiety I had been feeling the last several days. But at that moment — as I sat in the chair waiting on her to take my sample a calmness came over me that I had not felt in some time. I felt peace.

 

I knew that no matter what the results, we had plan A, B, and if needed C. We hoped for the best, but knew we could deal with the worst.

 

Teresa paused before putting the needle into my arm. We looked at each other and I said, “I’m ready.”

 

Kevin
Optimist
Pessimist
Trying to live in reality
MIZ