Tag Archives: advanced metastatic cancer

Giving Thanks

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Today is Sunday November 25th, 2018 and what started out as a simple Facebook post has turned into an essay. I did not mean for that to happen, it just did. Sometimes I get to typing and all of these thoughts start swimming around in my head and out they come. Sorry.

I guess my fingers just cannot shut up. I lovingly get that from my mom I think. She is a talker. At times I can be as well. Speaking of mom I recently noticed that for the first time someone had unfriended me on Facebook. So I call my mom and ask her why she unfriened me. She pointed out that it could not have been her. Hell we are not even friends. Point well made mom.

So I get up this morning and it is blowing snow outside. So I went back to bed. That reminds me of my college years. If it was raining outside I did not go to class. Bullshit melts you know.

When I did decide to get up I was sitting at the kitchen table watching the snow come down and drinking my coffee out of my Cardinal mug. My Tiger mug was dirty. I used it on game day Friday. Did you see the beat down put on the little piggies by the mighty Missouri Tigers? I loved it.

I do have to be careful and watch what I say. I have a lot of family who live in Arkansas. Others graduated from the University of Missouri and were able to escape.

I have to remind myself that we do owe Arkansas thanks for that great and needed invention called the toothbrush. Now if it had been invented anywhere else it would have been called the teeth brush. Just saying.

So while drinking my coffee I am smiling thinking about the past few days. All the kids and pets were home for Thanksgiving. Last year Thanksgiving was at Erin’s. This year we gathered back at that little house on Judith in Wichita.

So the kids had to travel over the river and through the woods. Sometimes you cannot trust that GPS. I keep telling them that it is a straight shot down I-35 out of Kansas City. Someday they will learn to listen to me, or maybe not.

Amy, Allie, Justin, Cheeto, and Kiki the cat arrived home Wednesday night. Kiki could not stay long. Erin is very allergic to cats. Kiki did not spend much time in the house. On Thanksgiving we welcomed Erin, Steven, Camden, and Dixie.

We have lived in this house almost 28 years. Two years ago was the last Thanksgiving we were all together on Judith. It was then that we all sat down at the kitchen table and we explained to the kids that I was sick. We spoke about Brutus.

Christy and I had known about Brutus for awhile. I had thought that I was going to be able to keep Brutus a secret. I had hoped to never have to tell them about Brutus. Then we learned that Brutus was going to be more of a big deal than we had thought. That led to the kitchen table discussion. The news was not taken well.

The kids made me promise that I would never again keep news about Brutus from them. They wanted to know the good, the bad, and the ugly. I think I have been able to keep that promise at least most of the time.

That discussion was long before this blog was started. Since starting the blog I have made it a point that they would know what is going on before it appears here. I do not want them to learn what is going on from these pages.

Since we were all together again I was grilled on what was going on and if they knew everything. For some reason I think they feel that I am at times holding back. They might be right. I assured them that for now they knew everything (they needed to know). At times they get very pissed with me. Go figure.

So while sitting drinking my coffee I am thinking about the Camden time I had the past few days. A bigger smile is now on my face.

Camden and I had many leaves to take care of. I mulched up most of the leaves with a mower. Camden followed along. It was 69 degrees outside.

This was the first time this year that I have mowed. I had to hire a service last year during midsummer to mow the yard. Dealing with Brutus was just too much at that time. I never knew from day to day how I was going to feel and found that doing yard work quickly zapped me of my strength. So this year I just started the season with a yard service. It bothers me that I cannot even mow my own yard. Damn!

So Saturday, yesterday, Camden and I decided that we are going to tackle those leaves. We got the little John Deere push mower to start and off we went with Camden right behind me.

I bought that mower when we bought the house. Nothing run likes a Deere.

Then we tackled the small garden area in the back yard where I grew a few tomatoes. Keeping up with the big garden and little garden were a bit much this year. The little garden did not get the needed attention. Hell neither did the big garden. Camden helped me pull up the tomato cages and take out the weeds. He was a very busy little man.

So we mowed and took care of the leaves. We fertilized and watered the lawn. We had to get all that done Saturday, because snow was suppose to move into the area Saturday night. After the yard work we spent time at a city park a few blocks away. We had fun. I even felt good.

Next year the plan is to once again to do my own yard work. I do not like the service. They just do not get the yard looking like it should. You know I am one of those guys that take great pride in his yard. I mow twice a week during the spring. I measure the grass to make sure it is the right height. If I see one goddamn Dandelion in my yard well all hell breaks loose. Yes I am one of those guys.

I am trying to change. I do know that there are more important things than keeping your yard looking great. The garden needs to look good as well.

Also Winston tries to help me keep things in perspective. He just pisses on my grass and kills areas. I have finally given up that fight. I just buy sod a couple of times a year and fix his destruction. I am anal.

So with the threat of snow moving into the area Saturday night, plans changed. All the kids left to return to KC Saturday evening. Cammy was the last to leave. They pulled out around 7:30. Cammy was crying. He did not want to leave his Papa. Or maybe it was because he had not had a nap in two days and he was hitting that melt down wall. He was asleep within five minutes of leaving the driveway. He slept for 12 hours. I think I wore the kid out.

So now I sit at the kitchen table. The house is once again very quiet. No little man pulling my hand or shirt wanting me to get onto the floor and play, saying “Papa wook at dis.” I miss him.

I am thinking how thankful I am to have my family. I am thankful for the time we are able to spend together. I am also thankful that they have their own homes to go to. I kinda like this empty nest thing.

All kidding aside having homes of their own is a positive. It tells me that we did good. We raised three kids who were able to eventually leave the nest and make lives on their own. I am very proud of them.

Sitting in the kitchen I find myself thinking about this last year. Things we have had to deal with and overcome. Victories we have had along with a few minor setbacks. A couple of those setbacks were two additional cancer surgeries. Damn!

I think of trips I have made this year. We went to Hawaii, Colorado twice, Wyoming once, Arkansas a couple of times, Missouri several times, and of course St. Louis twice. Been to Oklahoma, wait a minute I was just driving through Oklahoma thankfully. Now that is a flyover state. Okay, okay there are a few places there I want to go. Maybe next year.

One trip we are hoping to make next year is to Alaska. This trip has been at the top of my list. With a new grandchild due to arrive in February I asked Christy if she wanted to put this trip off a little longer so that we had more time to spend with the newest little Heger.

Christy told me that she did not think that was a good idea. She pointed out that I am feeling okay now. We do not know what tomorrow will bring. We need to do this trip now. She is right.

We have a two-week trip booked for the end of July into August. I am looking forward to the adventure.

Joining us for the first week in Alaska will be my sister-in-law Connie and my brother-in-law Brad. They drove up here from Arkansas a few weeks ago to have some fun, which means spending time with me. We also finalized the trip. They traveled with their toothbrush.

I enjoy spending time with them. We had the World Series of Spades while they were here. The teams were brother-in-laws against sisters. We were clicking. Our pitching was spot on and our bullpen was shut down. The women had no chance. We showed no mercy as they tried blind nil after blind nil.

We took them down 4 games to 0. Let me repeat that, 4 to 0. Connie commented that you win some and you lose some. I had to point out to her that they lost them all. She loves me.

I had to make sure there was some distance between us when I made that comment. She has been known to come after me with wooden spoons. Or putting pepper in my mustache while sleeping. You wake up and inhale then you find you cannot breathe. She has short sheeted my bed and put shaving cream on my pillow. I cannot remember all the shit she has done to me. She is just trying to get my attention. She loves me.

I get another cup of coffee and I am still thinking about how thankful I am for the people in my life. So many that I cannot mention everyone today.

I do want to talk about a trip I took in October back to my Homeland. I do plan in the future to have a blog post about that trip, but today I wanted to talk about it as well.

On this trip I was able to reconnect with people that I have not spent time with in 30 plus years. A few I saw last year when I did the “Let’s get Reacquainted with Kevin Tour.”

“It’s been said that everlasting friends go long periods of time without speaking and never question the friendship. These friends pick up like they spoke yesterday regardless of how long it has been or how far away they live and they don’t hold grudges. They understand life is busy and love is there.”

I do not know who said that, but from my experience I find it to be very true.

When I was told that I was sick I said to myself, “I got this!” When I learned that they were not going to be able to fix me I realized that “I might not have this.”

I was told by a friend in the medical field that I needed to figure out what I wanted to do and then go do it.

What I want to do is make a difference in people’s lives when I can. I think at times I am able to do that. I am thankful.

I wanted to travel and see more of our great nation. So far I have been able to do a little of that. I am thankful.

I wanted to reach out to people that have been part of my life. That could be a relationship from years ago or one that is more current. I wanted them to know that our relationship no matter how long ago meant something to me.

In my quest I have not been turned away. The outpouring of love and kindness I have felt I cannot explain. We picked up right where we left off.

This is Brenda with her grandchildren Isaac, Natalie and Libby. Isaac is a cool kids to talk to and he played the piano for me. He is good. I hope one day to be as good as he is now. Natalie showed me her Bicentennial Little Miss Contest Crown. She is a beautiful young lady. Libby I did not get to see this trip. Hopefully next time.

Rusty and I sat down for a few cups of coffee in Wellsville. Hours later we decided that we needed to do this more often. That is the plan.

Dave and I letting whiskey do what whiskey does. We have a long history with that.

Sharon and Jim are two of my favorite people. I cannot tell you what getting back in touch with Sharon has meant to me.

I did not get to spend as much time with Doug as I would have liked. I should have let him know I was coming. Next time.

Jeff and Carolyn are my Missouri brother and sister.

Robyn and Laurie are great friends. Grade school, high school and college. We have had some interesting times together. Spending time with them again was wonderful.

So as I sit here now with another cup of coffee. I want each of my past and present friends to know that you have shaped my life. You have made me the person that I am today.

For that I want each of you to know how truly thankful I am and will always be.

Kevin

Why?

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September is Prostate Cancer Awareness Month. I guess every disease has gotta have its month. I think of it more as a day to day disease. But that is just me.

I thought about talking about the statistics of this disease such as a man dies every 18 minutes in the United States from prostate cancer. That it is the most common diagnosed cancer in men and the second biggest killer.

I thought about writing about the pros and cons of having a PSA test and at what age. That is a question constantly being debated. The medical community really has not come to a consensus. It is a discussion you definitely need to have with your doctor around the age of 50 and possibly tested then or at least by the age of 55. Now if you have a family history that is a different story. Testing then should be much sooner.

I guess that I should put in here that I am not a doctor. You should seek competent medical advice. Good luck finding that.

The above topics need to be discussed. Just not by me. They are boring and you can read all about prostate cancer on the internet. I have. Just stick to legitimate web sites. Of course if you want alternative treatments they are out there. One person told me that I need to drink hydrogen peroxide. Excuse me, I think not. For now I will stick to the regular stuff that kills you. Bartender, give me a tall glass of chemo along with a shot of Lupron please.

So what do I want to talk about? Well me of course. I like talking about me. So here we go.

Eisenhower was president and he wanted to conduct a new census so my parents made the journey to their homeland in Mexico. No, no, no I was not born in a barn but rather in Audrain County Hospital in Mexico, MO. I do not know anything about a census going on just thought I would throw that in there. Eisenhower was president when I was born. I like Ike.

I do get a lot of mileage about telling people here in the Land of Oz that I was born in Mexico. I even show them by green Barnes & Noble Card. I do get around to telling them Mexico, MO. Many people around here think I am Hispanic. I have been in so many homes where the people will look at me and start talking to me in Spanish. They eventually figure it out.

So why did I just waste valuable space and talk about really nothing related to cancer? I am stalling I guess. You see what I am going to share with you is very personal and hurts. I will talk about my family and some of you know them. More specifically I am going to talk about my father.

One thing you need to know about prostate cancer is that it is one of those hereditary cancers. Most men who get the disease do not have a family history, but if you have a close family member who has the disease then your risk of getting the cancer is greater than someone without a family history. The more family members with the disease, then the higher the risk you have of getting the disease.

If you have a family history you need to start getting tested at age 40.

African Americans suffer from this disease at a higher rate than white males. Men of color should be checked at age 40 even without a family history of the disease. Please talk to your doctor.

When I started this blog in a way I knew that I would be opening up myself to family, friends, and strangers. That is something I was not sure I could do. It has been easier than I thought, and most of the time I feel better after writing. In writing you do not have that personal interaction that makes you think twice about what you are going to say. So most of the time I just say what I think and feel, and of course try to throw in a little humor from time to time. I need to laugh. I am not sure there will be much more laughing during this conversation. I will try.

I do feel like I am actually talking to you and not writing. Funny isn’t it. Of course I picture you on the couch in your lingerie while we have this discussion. Hey this is my blog and I can have those fantasies. I have that visual because most of my readers are women. Or at least it seems that way since I am most often contacted by women who have read the posts. Some of the people who have contacted me are going through cancer themselves or they have a loved one who is dealing with cancer or they have lost someone to cancer. I hate cancer! They are kind and tell me that I have helped them. That makes me happy.

Some people contact me by email after the essays, and others comment on the Facebook link. I am going to ask that you do not comment on this essay. Just read. I think that you will understand why I ask that as we talk.

Years ago I was visiting my grandfather at his residence in Columbia. My grandparents had moved there after selling the farm near Mexico to be closer to quality medical care.

On this visit my grandfather started giving me things. He started giving me household items like he no longer needed them. I did not understand why he was doing that. I did not need or want these things. He did give me some old pictures of when I was growing up and spending time on the farm. I do love those.

During this visit he said out of the blue that he would not give five cents for his life on this earth. He hoped that Heaven would be better.

I did not understood what he meant by that or why he was saying that. In my mind he had a good life. I did not ask questions. Things were getting weird and I just wanted to leave.

I want to take a short time out from this cancer talk for just a moment to comment on my grandfather’s farm. I want the people to know who live there now that I get sick every time I drive by and see what has happened to the property. If you do not clean up that place and put some paint on the house that my grandfather built I will one day stop and pull up into that long drive. When I get out of my car I am going to bitch slap somebody. You have been warned. Thank you for letting me vent. I feel better.

Now I want to get back to my grandfather. That day that he got all weird on me was the last time I ever saw him. He died a few months later. He looked good when I saw him. I suspect he knew that we might not see each other again. That I believe was why he was acting the way he was. That is why he said what he said. I did not even find out that he had died until several months after his death. My father never told me.

I learned that he had cancer. I do not know if that was what killed him or not.   I did not know what type of cancer he had. My father never talked to me about my grandfather’s illness. Hell we rarely ever talked.

Now I need to explain a little about my father. If I told you that we were not close that would be a major understatement. I would say that we did not like one another. He was not what I would call a good person. I will explain, but I do not want to turn this into a bash dad essay. It might turn into that.

I grew up in a violent home. My father was a physically abusive person.  Not every day, but when it happened, it happened big. You walked on egg shells trying not to piss him off. When he drank it was much worse.

When I was a child he was either hitting on me, my brother, or mother, but as I got older I was hit less often. At times I could stop my mom and brother from getting hit. I did not like the man as a person or as a father. I did learn a little about being a father from him. I have asked myself what my dad would do in situations I found myself needing to handle. Once I answer that question I just do the opposite. It has served me well.

I moved out in August of 1978 to go to college. I never lived with my parents again. My brother told me that things got worse after I moved out. They eventually divorced. Thank God.

You wonder why am I telling you all this. I really do not know. I guess my therapy. I wish I had a relationship with my father. I wish he was different. I have so envied friends who have good relationships with their fathers. I never could pick up the phone and talk to him and tell him about the kids or seek his advice.

I guess I am telling you this because of what I am going to tell you now. It is kind of like background information for the finale.

In February of 2012 I got a call from my mother that dad was dying. He had cancer and he did not have much time left, and if I wanted to see him before he died I needed to get there. I was not sure I wanted to go. I decided to go because I had things that needed to be said.

When I arrived he was in a drug induced comma due to the pain from his cancer. He could not talk and if I had been told that I probably would not have gone. Since I was there I decided that what I needed to say was still going to be said. Not sure in his comatose state that he understood anything I was saying, but he might have.

So I sat in a chair next to his bed and talked to him. I am sure I said some mean things. I am also sure that I told him that I wished things were different. It hit me hard that we would never be able to reconcile our relationship. That made me sad. It hit me that I loved him. I told him that. I am sure we had some good times. I just cannot remember them.

All food and water had been taken from him. He was going to die soon, but I was told that he could linger for days. The next day I left. When I got home I got word that he had died.

Cancer most likely killed my grandfather years earlier. I did not know what kind of cancer. Cancer killed my father, but I really did not know what type of cancer.

My father had chemo and his white and red cells were all messed up. His mother my grandmother had died from leukemia. I thought that he also must have had a blood cancer of some type. No one told me different. His third wife did not tell me. This was the first time I met her. I never met his second wife.

A few years before my dad died I started having symptoms of cancer. It was 2009, but I did not realize that what was happening was cancer. I did not know nor did my doctor think that I had cancer. When I told my primary care doctor of my problems he gave me pills. That little blue pill and it worked wonders. I was happy. But as a man in his late 40’s should I really need that medicine? Were we treating symptoms of a disease that we had not identified?

When I was in my late thirties I had my first spinal fusion surgery. I had a herniated disc in my upper back/neck area that was fused. I was told that I had degenerative disc disease. I was told that in the future I would need more surgeries.

My neck started acting up again, and I was able to control the pain with shots. I had a pain management doctor and for years I was given epidural steroid injections. Eventually they stopped working and surgery became my only option.

During this time I was also experience some urination problems. Since I was seeing doctors all the time I decided to bring up my problem. I again had a talk with my GP and more medicine was given. He asked me if I had a history of prostate cancer in my family. I told him not that I knew. He told me that I was too young for prostate cancer, and I did not have all the symptoms. I was not tested.

If you research the symptoms for prostate cancer I had most of them, but because of my age and no family history I was not tested. People my age he seemed to think did not get prostate cancer. Boy was he wrong.

I thought about all this and realized that I really did not know what kind of cancer my grandfather or my father had. I started doing some checking and asking questions. What I learned was that they both had prostate cancer.

When I was back to see my doctor I let his PA know about my family history of prostate cancer. I was tested right then. The PSA was high and my PC doctor told me that with that number I had cancer. He sent me to see an urologist Dr. Richard Little. I think I have talked about Dick before.

When I first met Dick he did not think I needed surgery. We could watch and wait. I was also trying to avoid neck surgery.

I was able to put them both off for a year. The pain in my neck and back finally got so bad that something had to be done.

Also my PSA numbers had a dramatic increase in a short time. I could no longer avoid surgery. When I got a second opinion I learned that the cancer threat was much greater than we had thought. Damn Dick.

So I had neck surgery in August of 2016. They fused C4, C5, C6, and C7. Two titanium plates were placed in my neck and I am not sure how many screws. Neck and back are much better now. Have lost range of motion, but who cares.

So after my neck surgery in August I had cancer surgery in December of 2016. That started the process we are currently trying to deal with. How long will this go on? Who knows?

When I am sitting by myself and I am trying to figure things out I realize that what has happened to me did not have to happen. No it did not. That brings us to the title of this essay and the million dollar question. Why?

I realize that men from my father’s and grandfather’s generation did not talk about their problems. They want to keep things private. I would imagine that many families have relatives that have medical conditions that they really do not understand, because the person with the problem does not want to talk about it.

Men tend to suffer in silence. They do not want to talk about prostate cancer. They do not want to tell people they have prostate cancer. They do not want to talk about what the disease has done to them.

Even knowing that I do think that most men would tell their children, “Hey get checked.”

Why didn’t my dad tell me that he had prostate cancer? Why did he not tell me to get checked?

The disease is hereditary. You can get it without a family history of the disease, but if you have a history you are more likely to get it. I am sure my dad had the disease for several years before he died.

If I had been told earlier, like when my father suspected that he had the disease or even when my grandfather died, to get checked then my disease, I feel, would have been found at stage I or stage II. I could have been cured. I would have been cured. Why?

It is hard for me to accept that my father kept information from me that would have dramatically change things. Again, what I am going through did not have to be.

Christy wants to think that maybe he did not understand how important it was for my brother and I to know about his disease. I do not believe that for a minute. His father had the disease. He knew.

I learned that he had commented before he was diagnosed that he knew from his symptoms and from his father’s experience that he had the cancer. He waited too long to be checked.

I do know that the history of prostate cancer killing men in my family will end. I will not allow this to happen to my son.

He will be checked at age 40. A baseline PSA will be determined and his numbers will be checked every year. If or when the disease hits him he will be ready. This will not take his life.

What my father has done to me by withholding that information is unforgivable. But I have had to move on. Hate will consume you and destroy you. You have to let it go.

I have accepted what has happened. I have not accepted what is going to happen.

I cannot let what has happened consume me. I cannot worry about the future. I have to live in this moment and make it the best that I can.

I was going to get this disease. That most likely could not have been prevented. It was in my genes. What could have been prevented would have been the severity of my disease once it was identified and diagnosed. If I had been anticipating it, and looking for it we would have found it much sooner. I would not be in my current situation. This did not have to happen.

I am finishing this essay on Friday night the 14th. Earlier today I had a discussion over the phone with a nurse from Dr. U’s office. She had the results from my latest tests. This week was the start of my once again every three months appointments with Dr. U and Dr. O. I see Dr. U next week.

She gave me the numbers. They were not good. I guess they could have been worse. You see I am looking for the positive.

Since I am off drugs these test results were going to be very important to me. If your PSA number doubles in three months or less that is very bad. I understand that is a sign that you have metastatic disease, and that it is spreading.

It has been three months since my last test. My PSA has gone up six fold in those three months.

Ruh-roh Kev. Yes Winston that is not good.

I feel as though my father gave me a death sentence. Each treatment protocol I try is like a temporary stay of execution. I live with the fear that my executioner will have his day.

If there is an afterlife and I again see my father I would like one question answered:

Why?

How’s Your Cancer?

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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