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

18 thoughts on “Let’s Talk

  1. Thank you for sharing. I can relate to much of what you have written about. Wishing you strength, health and happiness as you deal with the challenges ahead. Cheers, Phil

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  2. Great post, Kevin. You’re farther down the path than I am—I’m just stepping into the recurrence zone—but our thought processes and sense of humor about this are quite similar. My take on this is that we beat cancer not by surrendering our lives to all sorts of pills, needles, and zapping machines. We beat it by living the life that we want to live for as long as we can, even if that means it may be a little shorter than had we gone through the treatment rituals. Sure, there’s a balance that has to be achieved and treatment will be needed near the end to control pain. We’ll eventually surrender control, but we will have fun living in the interim. All the best to you. —Dan

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  3. I’m all for New Kev and living quality life as best you can every day. Live life to the fullest. Your attitude will help fight those cancer cells. Sorry you got locked out! That made me laugh. I should not, but it did as that has happened to me. Keep dancing and get those dancing shoes ready for Melanie and Jake’s wedding. I bridal dress shopped with Erin and Amy a few weekends ago, and I agree with you. Everyone needs an Amy. She is delightful, so creative, and the same can be said for Erin. Fantastic girls with amazing talents.

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  4. So nice to hear from you, Kevin. Again, I am so very sad you are having to go through this. But in spite of it all, you are so damn funny! Thanks for the therapy! Connor was home for a month for Christmas and now he’s back at school. Maybe we can meet for a Mizzou basketball game? Take care. Leslie

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    • I was thinking on trying to get tickets to the SEC tournament, but our Tigers have run into tough times. We will have to see. If I am there I will let you know. If not I will call when in town for a baseball game this spring.

      Glad you enjoy the blog. Please do not feel sad. I am feeling better, and I am happy.

      Love ya.

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  5. Kevin. I truly love your writings! Thanks once again for sharing. Proud of your choices and your tenacity. You make me laugh. 🙌.

    I’m bringing some new material to tap class this semester. We will start Jan 30th. Joice Henry is teaching the first class for me as I will be living it up in Vegas that week!

    Happy fruitful 2018 to you and yours! I like to give my Years a theme/focus. 2017 was hugs! Tried to hug more often, more people, and more fully. My best friend put up with it for a year and as soon as 2018 she asked if we had to continue hugs in 2018. Made me laugh….good friend to endure hugs for a whole year just to help a friend reach her goals. So–this year my theme is FRUIT! Living a fruitful life, fruitful relationships, fruitful thoughts, Im going to plant some fruit trees and try to consume more fruit to!!!!

    Hope to see you this semester.

    Have a fruitful week! Julie Sharp

    >

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  6. Well said. I concur with all of this. Whenever I am able to get back out of this basement and back to living some sort of slightly independent life I shall meet New Kev for coffee and there will be plenty of speech about not cancerous stuff. ❤️

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    • Steph you have been through so much, and I hate that. I will text you to arrange our coffee date or just a drop by to say hi if you are not yet ready to get out. We can then cuss at the medical industrial complex together.

      Love ya.

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  7. Old/New Kev,

    Not sure which Kev you identify with today–is multiple personality disorder a side effect of the medication?

    Parts of this post, I could definitely identify with–mainly weight gain.. but mine doesn’t have an excuse other than I eat what I want and I am a lazy piece most days.

    As a health care provider, we see patients go through some really difficult moments in life. We see their family go through these moments with them. Sometimes, we see it so often we forget how fucked up this shit can be. Your post is a reminder on how real physically and mentally diseases can be. Thanks for reminding us why we do what we do.

    Lisa

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  8. Hey Kevin it’s Pam I talked to Justin briefly the nicest thing I think he said was that I was always someone he could talk to. I know we didn’t know each other too well personally but to Justin and Grant I still felt a kind of connection
    Grant’s words many years ago was that Justin was his childhood friend. Kind of cool. I hear you were going on a wonderful trip I would also like that kind of trip it would be kind of one of those refreshing type vacations. My sister and her family have been there sounds really great
    My dream someday was to retire which I doubt I will get to do but to volunteer in the children’s Wards in a hospital read or talk to them make him happy. I don’t know it’s still still in my mind. Well well that’s my little short conversation for now take care and have a great trip

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  9. Hang in there. Thank goodness I’ve never had to deal with med issues, knock on wood. I’ve been blessed with good health my whole life but watched the pain of several very close friends leave this world. The great thing is I still carry my memories of my friends and at times ask them for advice when I need some. It’s how I deal with the loss. Enjoying your blog, keep it up! V

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