Choices

It has been several weeks since I have written any update to what is going on with Brutus. A few things have happened. I have had several doctor visits, and many tests to get an idea on what is going on right now inside my body.

I keep putting this conversation off waiting on the next appointment, waiting on the latest results. The results are in. Can I have the envelope please?

Now picture a beautiful young lady with brown hair walking into my study and handing me an envelope. My study was formally known as Erin’s bedroom. I moved a desk and a computer into the room. Oh and a refrigerator for beer.

Now back to the woman. Yes Christy fits that description, but it is not her. Now by young I mean a lady most likely in her 50’s, but 40’s or 60’s would be fine. I do not discrimination by age in my fantasies. I am getting older you know. I hope that aging process continues, so back to the envelope.

The brown eyed lady tells me that the envelope has been hermetically sealed, and that it contains the results tabulated by the accounting firm of Ernest and Tubbs. She hands me the envelope and walks away. History just repeated itself. Damn!

I open the envelope and it says: Dear Kevin – you still have cancer. It is not going away. Now deal with that. You have choices that have been explained to you. You now have to make a decision. That decision needs to be made now. It was signed: Sincerely, your medical team.

That is what this essay is about:  The choices and risks facing many cancer patients.   The pros and cons of those choices and the stress one goes through in trying to make that decision.

Camden as you grow older you will find that life is full of difficult choices and some that are not so difficult. Going to the pumpkin patch with you instead of watching football was not a difficult decision. We had fun. Spending time with you brings me so much joy.

While at the pumpkin patch you had to make the decision on which pumpkin you were taking home. I know you had your eye on a large one, but you could not quite pick it up. The one you chose and carried out of the patch looked great. You made a good choice.

Making a decision can be hard. You should be at my office around lunch time and the ladies want to know where I am taking them to lunch. I ask them why that is always my decision? They say, “Dah, because you are driving.” I throw out some choices and soon a decision is made. Sometimes I have to use my veto power and tell them to pick again if I do not like the choice.

Picking pumpkins and a place to go for lunch are normally easy decisions. Sometimes the decisions we are confronted with in life are much more complicated.

You see Camden there can be problems in trying to make a decision when you have difficult choices. When you make a decision you often do not know if you made the correct decision. Sometimes you know right then, but often it takes time to tell if you made the right decision. It might take a day, a week, a month, or even years to really learn if some decisions you made were correct.

You might wonder how a person goes about making these tough life decisions. I am sorry to tell you that I do not have a fool proof answer to that question. Many times I have learned that I was wrong and I must then correct myself and make things right. I know that is hard for you to believe that your Papa has ever been wrong. Just ask your mother.

I will tell you that you should never make decisions where you intentionally hurt innocent people. I say innocent people because unfortunately some people are evil and make decisions that hurt others and they must be stopped.

When all is said and done you must be comfortable with your decision. Sometimes you will find that your decisions will not be popular, and some might not agree with your decision. They can second guess you and they will. The bottom line is that you have looked over your choices you must make the decision that is right for you.

One day I was driving down the street and over the radio a robbery in progress call was broadcast. I was just seconds from the fast food restaurant that was being robbed.

I pulled into the shopping area and parked out of sight from the business windows. When I got out of my car an officer pulled up. I grabbed a shotgun and we walked up to the side door entrance near the front counter. The officer opened the door for me and I walked into the business pointing the shotgun at the robbery suspect. The safety on the shotgun was off and my finger was resting outside the trigger. The officer came into the business after me and was standing behind me. He was a smart guy, no sense in both of us getting shot.

When I walked into the business I saw the robbery suspect holding a handgun in his right hand. He was pointing the gun at the young female employee behind the counter. The gun was pointed at her face and she was crying.

I identified myself and told the suspect to put the gun down. The exact words I used I do not remember. I might not have been very nice.

I looked at this robber and what I saw was a kid. I mean a kid. He was short. Shorter than I am, and I am short. If he would have been standing next to me he may have reached the area of my chest.

He did not follow my instructions and put the gun down. Rather while still pointing the gun at the store employee he turned his head toward me and was looking at me. I again yelled at him to put the gun down. He did not.

Instead of putting the gun down he turned his body toward me and now was pointing his gun at me. I had to make a decision on what to do. I did not like my choices.

As I looked at him pointing that gun at me I thought to myself, “Kid you get the first shot. I hope you miss.”

Had that kid been a little taller I would have shot him. At that moment I could not do that. He looked so young that I could not bring myself to shoot him. I am not sure I could have lived with that decision the rest of my life. I decided not to shoot.

I again yelled at him to drop the gun. He did not, but he yelled back that the gun was a toy. That gun did not look like a toy to me or to anyone else in that business. I again yelled at him to put the gun down. He did.

The officer grabbed the kid. I grabbed the gun. It was a toy. It was a goddamned toy gun! The kid was nine years old. His father had been in or was in prison at the time for armed robbery. That kid came close to losing his life. I came close to losing my mind.

The gun looked very real to me. A picture of that gun was later on the front page of the newspaper. It was there to show just how difficult our decisions can be and how often our decisions are made in split seconds.

Some did not agree with my decision. Some felt that I put myself in too much danger and in so doing I was placing others in danger.

I made the decision that day on what was right for me. What type of person I was and what type of person I wanted to be. I was willing to take the risk of being shot. I wanted to give that kid every opportunity for life.

It worked out for me. It worked out for him.

Later that night I was called into the supervisor’s office. He sat me down to talk about what had happened. He told me that I had made the right decision.

When our conversation ended and I got out of my chair to leave the office he stopped me. He said, “Kevin, one more thing. I want you to know that if you had chosen to shoot that kid that too would have been the right decision.”

I understood what he was trying to tell me. He was saying that the law textbooks say that I would have been legally justified if I had shot him. I nodded and walked out. I will never forget that conversation. I will never forget that kid. I took a risk that day and it worked out. Sometimes you have to ignore the textbooks.

I have found myself once again having to evaluate choices and make a critical decision. A decision on how I want to live my life. Some believe that I am taking a risk in what treatment option I have chosen in dealing with Brutus. I understand that, but I do not think we can avoid risk in our lives. If I tried to avoid risk then I would not even go to work. Avoiding risk in my work is hard to do. You just deal with it, and try to minimize the risk.

Now in my personal life I have tried to avoid risk. I wear a seat belt when I drive. I look both ways when I cross a street. I refuse to be a passenger in a vehicle if Justin is driving. I do not jump off cliffs at Table Rock Lake. Okay, okay I might have done that. Justin made me. I can tell you that I will not ever do that again. My ass still hurts. Damn! Can you break your ass? I think I did.

We now know that Brutus is again growing. The question now is how far and/or how fast do we let the disease grow before doing something. With most men prostate cancer is categorized as a slow growth disease. Unfortunately with some men the disease is much more aggressive. I am one of them. Damn!

The velocity of growth is something that has to be closely tracked. Cancer grows exponentially. As more and more cancer cells are produced the velocity just increases. You can reach a point of no return. In that I mean that the cancer could grow to a point where it becomes much harder to treat. It might reach a point where it is untreatable. That is why my medical team would prefer that I am on continuous treatments.

I think of it like a game of “Whac-a-Mole.” At first the moles pop up slowly and you are able to control them with your hammer. The moles eventually start to pop up faster and faster. Then you find that you can no longer control them.

Dr. O’s philosophy is that you are either early with treatments or you are too late. His belief is that I need to be on continuous treatments because once you have stopped treatments it is very hard to be able to know the exact time when a person should once again resume treatments. The only way to be sure that you are early is to never ever stop. Now that Brutus is growing again he wants me on treatments.

Eventually the poison they are using will stop working. Brutus is not stupid and he will eventually develop a resistance to the poison. You spend your life going from one treatment protocol to another.

How long you survive depends on how well your body responds to the different poisons and the development of new poisons and treatments to extent your survival. Some work better and longer than others. Some you find out do not work at all. It can be different for each patient. What worked for one of your family members might not work for me, and vice versa. We might be diagnosed with the same type of cancer, but each cancer is so different.

Survival: I find the use of that word to be odd or even funny. Survival is a word often used by my medical team. They do not talk about living. They talk about surviving.

That is where I have this disconnect with my team on how we should be moving forward. When I explained to Erin that I was going off drugs she made the comment that the doctors were just trying to keep me alive. Yes, yes they are, and I greatly appreciate that. But there is one thing that must be understood and that is I have a different perspective than they have or most likely even you have. The only people who will understand what I am talking about are other cancer patients.

There is a difference between living and surviving. Modern medicine can keep you alive, but sometimes you have to ask if this is a life you want to live? Is it worth living?

I have often asked myself that if I knew before this all started where I would be today would I have done the same thing. That answer changes depending on my mood, but most often the honest answer is no. That is not what people want to hear so I never share it. If I had known from the beginning what was going on inside me, and what was going to happen to my body, and how my quality of life would be affected then my treatment decisions might have been different. My body, my spirit, my life has been broken. Just like Humpty Dumpty they cannot put these pieces back together again. But we are here so I will make the best of a bad situation.

I agree that the poison will work better when it has fewer cancer cells to deal with. The more cells the greater the risk that the poison will not be able to control them or they will spread to an area of the body that is not treatable.

I understand that. But I also understand this:

Right now I feel better than I have in years. I can work out. I can run. I can dance. I can sing? Okay, maybe I cannot sing, but I try. I mumble along while driving. I have a great shower voice. Maybe?

I am right now the most optimistic I think I have ever been on how my future looks. I believe that as we move forward things will work out and the treatments will work. I believe that new treatments will be developed. That is how I have to look at things. That is what I must believe. And I do. I do not plan on leaving this world anytime soon.

Now I have discovered one problem from coming off the drugs. That problem is that the discomfort I feel in several ribs bothers me more at times. When it hits I do not work out, run, dance, or sing. I pretty much do nothing. After awhile the discomfort decreases. It never goes away. I feel it right now. Sometimes it bothers me when I breathe. Exhaling does not bother me so much. It is that inhaling. I have been told in the past if something hurts then stop doing it. I am still trying to figure this one out. I will get back to you on that inhaling problem.

Drugs help, but I have told the team that I do not want to take narcotics. I would rather deal with the discomfort then take lortabs or oxycodone. They do work. I just do not want them. At some point they will become an issue with my employment. I wanted a non narcotic pain reliever if possible. They put me on tramadol. I do not know anything about tramadol. I take that back. I do know that shit is not working.

What I do not want to do is go back on treatments and no longer feel good. I do not want the poison in my body. I do not want to have a conversation with someone and then have to check out mentally during the conversation because I have to concentrate on trying to control the nausea that I am feeling and keep myself from throwing up on that person’s shoes. I am not looking forward to going back to hugging the trash can in my office on many afternoons. I am not looking forward to the headaches. I am not looking forward to the increased fatigue and weakness. Just having cancer you deal with fatigue and weakness. The poison just intensifies those feelings. I am not looking forward to the depression.

I went to see Dr. U and it was decided that I should also see another urologist to get his opinion on my situation. This will be my third urologist. I am getting confused. Should I call him U3 and then does that make Dr. U, U2? U1 was Dr. Richard Little or Dick. I fired him.

If Dr. U becomes U2 should I just call him Bone-O? An urologist called Bone-O. My juvenile humor is making me laugh. Ha Ha Ha. Yes Erin I am laughing harder than anyone else. That reminds me that I am about out of Trimix. Need to make a phone call.

(Okay this essay has been sitting around my house for about three days. I have decided that I might need to explain something to you George Strait fans out there so you get the reference. U2 is a rock band and Bono is their lead singer. Still not funny? Sorry I have been laughing for the past three days. You can continue reading.)

I have decided that Dr. U will stay Dr. U. Dick will forever be a Dick. The new guy will be U3.

Dr. U3 I am told is a specialist in advanced prostate cancer. He deals with the worst of the worst. Damn! He and Dr. U are colleagues in the same medical practice, but different buildings. I am told by a PA that U3 is probably more informed on different drug treatments that might help me.

So I am sent to see U3. I am moved into a waiting room where I sat for around 45 minutes. Dr. U3 finally comes in and introduces himself. He sits down at a computer and is reading about me. He then looks me up and down and the first thing he says to me is that I am much younger than most of his patients.

I really do not know how to take that. Is that good or bad or a little of both. I do not know. I am looking him up and down and thinking that he is an asshole. He is looking at me and I think he is sensing that his bedside manner is not playing well.

He then tells me that being younger is a good thing. It is? Really? That is bullshit! I do not think it is good at all. First off, if I had the choice I would never choose to go through this shit at all. But if it had to happen I would have picked a number much higher than my current age.

He then explains that I should be able to handle many of the treatments better than most of his patients. That is code for you are going to be one sick fucker before this is all over, but the treatments should not kill you. Damn! I think.

He then again turns to the computer and makes a comment about what he is reading. He talks about the spread of my disease and makes a positive comment about one of the scan results. The problem was that he was wrong. I did not say anything.

His PA was also in the room. She was a very sharp young lady, and pleasing to the eyes. Just saying. It became apparent to me that she had actually read my history before I came into the room. She corrected the doctor and gave him the correct results of my scans that were done at a hospital in Illinois. They were not positive results. He then responded, and I will quote him, “Oh.” I think that is pretty accurate. He continued to read and he made no additional positive comments. Nothing negative, but he no longer was waiving pompoms or being delusional with optimism.

Then we talked more. We talked about everything that had been done to me and my not wanting to go back on drugs just yet. I told him that since my cancer was again growing that Dr. O wanted me back on drugs right now. That he wanted me on continuous treatments. I explained that I wanted intermitted treatments where I would be on drugs for awhile and then off drugs to allow my body to recover.   I was willing to go back on drugs at some point. I had a number in my mind were I was comfortable with allowing the cancer to reach before going back on drugs. I had a risk level that I was willing to tolerate.

I explained to U3 that I was thinking about paring my medical team down and that most likely I was going to choose him or Dr. O to treat me. I wanted to know what his recommendation would be.

He then told me that Dr. O was right. That if you go by the medical textbook I should be on continuous treatments. He said that the most recent research showed that my survival would be better if I stayed on continuous treatments vs. intermitting treatments. Once again a doctor is using the word survival and not living. Damn!

I am thinking this is not good. What can I say to get him to shut up? Maybe I could throw my pocket square at him and whistle this recommendation dead. Maybe call him for roughing the patient or something. I needed a diversion, but it was too late to fall on the floor and fake a heart attack.

You see Christy was in the room. She has told me all along that she felt that by staying off treatments that I am shorting my life. Now she was hearing what this guy was saying. He was starting to make things more difficult for me. I did not like the situation and I was beginning to like him less than before, but boy that PA was cute.

We talked more and I gave him my reasons for not wanting back on treatments at this time. He was actually listening. I wanted him to understand that I was not a textbook problem. I was a human being and that I wanted to be treated as one. I wanted him to know that I understood the risks and that I wanted my opinion to matter. Once again there is a time to ignore the textbook.

You see I want to live and not just survive. To the doctor’s survival means being able to sit on the couch with drool running out of your mouth not really knowing what is going on, but still able to watch Vanna White turn letters for Pat. That is not living. Hey, I do that now. Never mind.

He then began to talk about quality of life. Thank God. He understood my quality of life issues. He told me that if I did not want to go back on drugs yet that he would work with me on that. He told me that he had a number in mind that we could not let the cancer pass. He gave me that number. It was my number!! It was the number I have said all along I wanted to reach before going back on the poison. I started to like him a little more.

Christy has told me that when I see the doctors that I am not very nice and I am grouchy. What I am is defensive. I do not mean to be, but I know that I am.

I cannot tell you how much stress is put on a person when they have to deal with cancer and also have to deal with a medical team that is not quite on board with your wishes. I have decided that if you are not on Team Kev then you are going to be gone.

I told U3 that I was not happy that Dr. U and Dr. O did not communicate better. I asked that he communicate with Dr. O. I told U3 that I would be seeing Dr. O the following week and that after that visit I would make a decision on who was staying on Team Kev and who was going.

We talked about future treatment options and made an appointment for January. Not so sure it is going to work. What I would like to do is hire his PA, but they come together. Will have to see how that works out.

I have to say that over the last few years I have seen many doctors. Both men and women, and I will tell you right now that I have been very impressed with the lady doctors. In my opinion they take more time in explaining things, and I feel that they are better listeners. The female doctors that I have visited with have been more upfront and blunt than their male counterparts. I appreciate that. U3’s PA knew my history, and she probably already has a treatment program in mind. I want her on the team. I guess U3 can join us as well. I will see them in January.

So I saw Dr. O a week after seeing U3. Dr. O told me that he has communicated with U3. After I picked myself up off the floor I told him that was excellent.

Then Dr. O said something else that took me totally by surprise. He basically said that he was caving to my request and was going to go along with me and the target PSA number I had chosen. I was stunned. Maybe now I can start being a little nicer.

Of course all of this depends on how fast or the velocity of the disease. If the velocity keeps increasing then I am back on the poison sooner than I had hoped.

It took a year of treatments to get the number down to where we wanted. I am hoping that it will take a year before having to return to treatments, but it might be nine months or even six months. I will take whatever I can get.

Taking everything into consideration I am happy. I am very happy.

Is it the most optimal plan? I do not know. I do know that it is the best decision for me. I know the risk. I understand the risk. I can live with the risk.

Some would say that what I am doing is allowing Brutus the first shot. That might be right. We do not know. If I am giving Brutus the first shot I only have one thing to say:

I hope he misses.

Kevin

Why?

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?

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

Chaos

I was sitting at the kitchen table drinking my coffee looking out into the yard at the bunnies running around and I was thinking of all of the things I wanted to do this spring. Playing ball, travel, running in races in which I will collect more t-shirts that Christy will try to hide or throw away, and of course trying to get well. I had many thoughts running through my head. I also thought about how chaotic and hectic the last month had been and if someone would ever be able to explain what was happening with Brutus.

I thought about what I needed to do to be able to get myself in shape to run the Zero Prostate Cancer 5k in about a month. I was wondering if my body had healed enough to even allow me to start running again. Last year I walked the race. I said that in 2018 I would come back and run. Not sure that is going to happen. I stopped running late last fall when the pain got too bad in my ribs. I am disappointed.

When I thought of what I needed to do in order to get back into shape I thought of my old trainer David Pace.

Dave and I have known each other since the 4th grade. We went to grade school, high school, and college together. We lived together a couple of years while at the University of Missouri in Columbia. We have a lot of history in which some has been pretty wild. I have many stories. I will not tell them here, at least not yet.

Several years ago Dave took a job in Wichita and he called me about where he and his family should buy a house. I told him that he needed to be in the Maize school district. He ended up buying a house two blocks from me.

When I was the most active with my running I would come home from work and go for a 3 to 5 mile run most nights. The weekends were for the longer runs or races.

Funny thing happened with those long weekend runs with Dave living two blocks away. I found myself leaving the house and jogging over to his place. He would invite me inside and grab two frosty mugs out of his freezer and two Bud Lights. Now that is what I call training. If it was before noon I would put a cornflake in the mug and call it breakfast. I do not think my times improved that summer. That is okay. I enjoyed the talks.

Dave and his family lived here several years. They moved away and now live in the KC area. My training has never been the same. Erin does not live far from Dave and Julie. I am planning on being in KC in a few weeks to see the kids. I might run, no I will drive over and knock on Dave’s door. Maybe drink a beer.

Dave has always been a very good friend. As I have been going through this cancer process his impact on my life has been even bigger.

He started by sending me cards out of the blue every so often that greatly helped pick up my spirits. Dave I cannot tell you how much those cards meant to me. He called so often that he at times was annoying. Just kidding Dave, but if you do know Dave as I know some of you who are reading this do, you know that he can be annoying at times. I love you Dave. You are one of my besties

When Dave would call I sensed that he was worried that he was going to lose a friend. He needed reassurance from me that I was not going anywhere. The problem was that I was also worried that he was going to lose a friend. Hell I am still worried he is going to lose a friend.

I felt the need to convince him that I was fine and that everything would be okay. I think at some point he finally started to believe. The problem was I did not believe what I was selling.

I also feel the need to convince each of you that I am going to be okay. Hell sometimes I start to believe it. In the short run I think things will work out. The long run, well who knows? In the long run I guess we are all dead. The problem is my long run is most likely shorter than most.

I try to stay as positive as I can. Being positive helps me get through the day. But I also have to face reality and at times it is very difficult to stay positive. It seems that for every step forward I have been able to take, I soon find myself taking two steps back. That has not changed. I get good news and soon the bad news follows.

I talk about Dave as an example of the support I have received since this mess started. Many of you have contacted me and let me know that I am in your thoughts and yes your prayers. I greatly appreciate that. Having that contact is what has kept me going, and will continue to keep me going. Thank you.

People who I do not even know have contacted me because they somehow found the blog. Some are cancer patients. I have exchanged emails with many of them and I am glad that they enjoy reading what I write and have found the blog helpful for their situation.

I have been called brave by some. I greatly appreciate the thought, but I am not sure that is the adjective I would use to describe me. You see I just do (most of the time) what my doctors tell me to do (they might disagree). I show up for my appointments. Show up for the scans and other tests. Let them cut on me when they have been able to convince me of the need. I just do what needs to be done.

Stupid is another adjective that some might use to describe me. At times that one is fairly accurate. I do not consider myself to be a stupid man, but I do at times play one in real life.

I have had contact with friends that I have not spoken to or seen in years. That has been wonderful. Sometimes I think that I have pushed too hard. I have at times said things I wished I could take back. I want to apologize for my stupidity. I would hate to lose contact with the people I have found. Sometimes I feel that I am running out of time.

My work family has provided me with so much support. I cannot find the words to explain to each of you what you mean to me. You have seen me at my worst. Each of you has done wonders for my spirits and your support has kept me going. Thank you.

Much has happened since the last post on March 18th. I had surgery and the surgeon talked me into another surgery, because he did not like the results of the first surgery. After I agreed to another surgery things changed, like they always do. I let the doctor know that I no longer wanted the surgery.

I have had more scans and tests. I have seen my doctors over and over. I am having another scan this week and another appointment with the surgeon to listen to him tell me one more time how he is going to help me.

I have a friend in town that is a cancer survivor and I was talking with him about all the crazy things that have been happening the last several weeks. He told me that when he was dealing with his cancer that his doctor told him that the best description he could give of cancer was that of chaos. Cancer never stays the same. Each day it is different. This causes chaos in treatments and in the patient’s daily life. Yes chaos is a good description.

Being a mush brained TV addict I thought of Maxwell Smart along with Agent 99 fighting the deadly spy’s from K.A.O.S. Brutus is an agent of Chaos and K.A.O.S. I need to call Maxwell Smart for help. Let me get my shoe phone.

I have found this past month to be especially physically and mentally challenging. My emotions have been all over and I find myself depressed at times. You will understand as this week unfolds.

I am going to do the post a little different than the past. I am going to try to write shorter posts and just post more often throughout a week or so. That means more work for Erin. I am sure she will not mind. I am going to give that a try because I am not sure anyone wants to slog through a 10,000 word post.

Let’s get started.

Kevin

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