The Calendar

Posted on June 28, 2020 by dearcamden2016

I am sitting in the kitchen this Friday morning, June 26th, drinking my morning coffee. Got back yesterday from spending a few days in KC with the kids and grandkids. I am still in vacation mode. I only know what day it is because of the kitchen calendar. Yes, the calendar.

I find myself looking, no staring often at the calendar. It was purchased last year while in Alaska. It has many beautiful pictures. For the month of June, you see a wonderful picture of a Humpback whale jumping out of the water. That picture makes me smile. It takes me back to our adventure and seeing with our own eyes many beautiful places and things. Including whales jumping out of the water. The beauty of this world.

When I look at the calendar, I also see quite a bit of writing. Like most people our lives are somewhat controlled by what is written on the calendar. Some things are written in pencil, and others in ink. What is on my calendar tells me where I will be going and doing. What is on my refrigerator tells me where I have been and what I’ve done.

As I sit here drinking my coffee looking at that whale on the calendar, I can also see the writing on the calendar. Now I cannot read it from where I sit. Damn bifocals. But I know what is on the calendar.

Most of what is on my calendar these days are medical appointments. A few are for Christy. Most are mine. My months are full of medical appointments, and June has been a busy month. July and August will be repeats of June. Probably busier. A few of those appointments are already on the calendar.

I have two surgeries on the calendar in July and most likely a third surgery in August. One is a back surgery the others are cancer related. A couple of those Humpty Dumpty surgeries. I am going to be home a while. I guess if I cannot travel, they might as well do some cutting. I hear that parts are parts, but I wish they could use original manufacturer parts. I do not want to do anything to ruin the warranty on this great body of mine. Back in the day. Many calendars ago.

A guy called and told me that his records showed that the warranty on my car was expired. I told him it was not my car I was worried about, but I could sure use a warranty on my body. I explained that I was a classic 1959 model. Had all the extras you know. I just needed a little tune up to get that varoom back. He hung up on me. That is okay, because right now I have no room on my calendar for any other appointments.

The calendar does more than organize my days, weeks, and months. Birthdays, anniversaries and other important dates are found on the calendar. It reminds me to ask Christy if she sent my mother a birthday card. I do not know what I would do if I were not married. Probably miss a few birthdays. Also starve.

What is not marked on the calendar is that I am now starting year six with Brutus. It is this time of year where I try to reassess my situation. Where I am at. A review of my disease. Right now, things are not going my way. Improvement will be coming. I think. Here is a refresher along with some new information.

You know the story. When I was first diagnosed my medical team thought that things would be fine. We later learned that things were not as good as originally thought. About a year and a half after my diagnosis I had surgery. A few months later I was told that I could not be fixed. That my disease had spread and that I was not curable.

After my advanced disease diagnosis, I wanted to know my prognosis. My medical team did not like talking about my prognosis. I often heard that my life expectancy would depend on how well I responded to treatment.

I did not like that answer. That was the play it safe answer. They had a good idea of my timeline. I wanted no bullshit. How was I going to plan for things if I did not know?

This is what I learned.

My prognosis has two numbers. The numbers were low and just a little higher. Damn!

Six to nine years. My second urologist said that he had a few patients like me who had survived ten years. He said nothing about any of his patients like me surviving longer. Damn!

At that time, the prognosis did not mean that much to me. Nine years, well that is a long time. That would give them plenty of time to find something that would fix me. Well that has not happened. So, I am now thinking that nine years is not long enough.

My timeline has not changed. I was hoping that everything we have done would expand my timeline out beyond those nine years. That does not appear to be what has happened. Hopefully, the treatments, surgeries, and poisons have pushed me closer to the nine. I do realize that if we had not done anything that I would most likely not be here today. My medical team has given me time. I have seen more days, weeks, months, and years. I have used a few calendars.

Now I just said that my timeline has not changed, but in a way it has. My timeline is now one to four years. I think I would rather say that my prognosis is twelve to forty-eight. Now that sounds better to me.

Things are getting serious. Well I guess they always were, but I could put my disease in the background. Brutus now has more of my attention.

As I explained in a past essay that at this stage of my disease it is the doubling time that is the best indicator of life expectancy. My doubling time has not improved and remains just under four months. If the doubling time does not improve, well that tells me that I will most likely not maximize my timeline.

The life expectancy of a man with my doubling time is around six years. I hope that my 1959 body can find the varoom to prove them wrong. But I would be lying if I told you that I was not concerned.

I think of a comment made by my current urologist when we first met. He could tell that I was feeling good. He let me know that my disease could blow up at any time so I should enjoy these good times while I could. He told me that they would not last.

What I have just shared with you not many people besides Christy and the kids know. I have tried to stay away from this conversation. Thankfully not many people have asked. Usually when someone has asked, I have told them, “Who knows?”

I have debated with myself if I would ever share this information while living. Or if it would show up in one of the A.D. essays.

I feel that sometimes I pull back and do not share my feelings the way I had first intended when I started this blog. I worry about upsetting people. I do not want to make you feel bad.

Just remember what I say here stays here. We will not talk about it in person. It is much easier to say these things to the internet. Not knowing who reads these essays makes it easier.

I hope that my ramblings will make some sense. Putting my thoughts and feelings on paper always helps.

I have always realized that Brutus would have his day. It is tough knowing that day is getting closer.

What the calendar is reminding me is that we are getting deeper and deeper into my timeline. I can no longer tell myself that I have plenty of time.

The battle of living I am winning and will continue to win. The battle of life. Well, that is a different story. Brutus continues to grow at a fast rate. My medical team is concerned. I am worried. I am scared. I must believe that things will get better.

I look at it this way and as I have said before I will beat Brutus by living to the fullest. Enjoying each moment that I have. I know that one day this will all be over. But Brutus will not have won. He will not have won because I am not playing his game. In my mind living and life are two separate things. I must think that way or my theory does not work. I ask what good is life if you cannot live?

As a side note a few people like to point out that I might get hit by a bus before Brutus has his day. Why so many people use the bus analogy I am not sure. I do not think that many people die from getting hit by buses. I have seen men taken out by jealous husbands and boyfriends. I think that happens more often than getting hit by a bus. I think that it will be a jealous husband who gets me long before a bus. Just kidding…maybe.

Christy is not worried. She asks me what woman would want a 60-year-old man with cancer. She has a point there. She is a smart lady. She married me. Well I guess everyone is allowed one fuck up in their life.

Hope you laughed. I needed a break. Now back to the not so funny.

I think at times I get a little depressed. Christy says that I am more than a little depressed. I try to hide it.

I am not sure if I am now more depressed because of my timeline. I find that to be just a little depressing.

Am I more depressed because the coronavirus has cancelled many of my travel plans and I realize that I do not have extra years to do the things I wanted? That too is a little depressing. But I would give up my travel plans if the virus would stop killing people. Damn virus! Damn Brutus!

I hope to be able to again travel with Camden. He loves trains. We build tracks and play trains all the time. He loves watching trains.

I talked to him about one day getting on the train in KC and going to St. Louis. Making a few stops in between. In St. Louis we would of course see a Cards game. I have talked to him about that trip. He got extremely excited and gave me a big hug.

I want to make that train trip. I want to make that trip more than going to New York, New Orleans, Spring Training, fishing off the coast of Alabama, or going anywhere else. I want to be with the little man. I want that trip on the calendar.

When I feel comfortable traveling again, I will hit the road. The dates will be written on the calendar.

I have finished my third cup of coffee this morning. So now I feel that I need to go write down some of these ideas before they disappear.

Before getting up from the table I want to take a few more moments to again look at that whale on my calendar. I see a strong beautiful animal having fun enjoying living. Not worried about the obstacles of life but enjoying the moment. We should all do the same.

In a few days I will flip the page of the calendar to July. I will have the surgeries and make all the doctor appointments. The calendar is incredibly good in helping me keep track of where I need to be and when. The calendar does more than that. It motivates me. It gives me an urgency that I might not otherwise have.

I do not know what the future holds. I do not know what the next twelve, thirty, or forty-eight months will bring. Good things, I hope. I am prepared to make lemonade out of life’s lemons. Hopefully, we can share a glass. I would like to put that on my calendar.

After reading this do me a favor. Look at your calendar. What do you see? Cross some of that shit out and add some play dates. Live with some urgency. Be that whale. Jump out of the water and shine.

Oh, and if you are in the kitchen looking at the calendar treat yourself to a bowl of chocolate ice cream. Enjoy!

Kevin

Are You Sure About That?

Posted on January 16, 2020 by dearcamden2016

Hello Neighbors! Yes, I have seen the Mr. Rogers movie. I liked it and if you have not seen it, I would recommend it. I give it a five donut rating out of five. Cops rate things on a donut scale.

I am certain about that rating. Not sure that I am certain about anything else. The cancer world is so uncertain. One day you think you have the answers and things figured out, but you soon learn that you do not.

It has been around three months or so since the last post. It is not that I don’t have anything to talk about. Many things have happened. I have just not felt like addressing them. But recently I have been getting text messages asking how I am doing. People are asking Christy at work. I even got a postcard in the mail from my friend Cindy. Getting a postcard tells me that it is time to talk.

I have been out and about on different adventures and often meet up with friends. Sometimes it is just for lunch other times we go on adventures together.

I enjoy my travels and visiting with friends. I also enjoy making new friends. You know that sometimes when I travel I might stop at a Dairy Queen or two, or more. Who knew they had so many Dairy Queens off of I-70 in western Kansas. I gained a few pounds on that trip.

Often I travel alone and when I stop at a restaurant, a rest stop, or even on the highway itself, I will often strike up a conversation with someone.

I have had a few conversations along the side of the highway with new friends. It is funny that they all had the same name. Who knew that Trooper was such a popular name? I have met Trooper Williams, Trooper Johnson, Trooper … you get the picture. I still have a license… for now.

One of my new friends asked me how fast I was going. I told him that I was not sure. He told me how fast I was going. I asked him if he was sure about that. He was. I said something like, “You know sometimes you just gotta let them ponies run!” Remind me to tell you how that ended when I see you. Long story, but Camden my advice is that you remember to take bond money on your adventures.

What motivates me to go out and hit the road? Well you know the answer to that. It is Brutus.

Brutus thinks that he is going to kill me. I am not so sure about that. But just in case, I have no desire to sit at home just waiting for it to happen.

I have many places I would like to see. Things I want to do. Conversations I would like to have.

I have felt urgency since I was told that my cancer was not curable. I feel that urgency even more now.

I am hoping that 2020 will be a good travel year. This weekend I will be in KC for Camden’s fourth birthday party. I will be back in KC for Adalie’s first birthday party in February.

In April I will be headed back to the White River in Arkansas fishing with friends. In October I am taking Christy to New York City for a week maybe longer. I have trip ideas for Colorado, Wyoming, Montana, Mississippi, Louisiana, Arkansas, Oklahoma, and of course Missouri during 2020. We will see how things work out.

When I am in your area, hopefully we can spend some time together. I look forward to seeing you.

Man it just does not seem possible that Camden will be four and Adalie one. Time goes by so fast. It goes by even faster when you want it to stand still.

This summer it will be five years since my cancer diagnosis. I remember many of those days like they were yesterday. Or at least like last week. I had a medical appointment last week. I see my urologist in a couple of days. Oh boy, fun, fun.

Anyway I want to update you on what we have learned and what the future might bring. In order to do that I would like to step back and explain a few things from the past. I might have mentioned some of these issues before, but I am going to touch on them again. It will be a good review and helps me explain where we are at in this process.

I would like to go over four things that I think are very important for someone dealing with prostate cancer or PC for short.

The first being how the cancer was diagnosed
The second is the Gleason Score reported by the pathologist after the biopsy.
The third is how you respond to curative treatment.

The fourth concern, and really once you get this far is probably the most important factor in your survival, is the doubling time of the cancer.

Now just remember that I am not a doctor. But I have spent a night or two at a Holiday Inn. Or was that a Hilton. Oh well, I was drinking. Anyway I just want to say that these are my thoughts, but I do have a little experience. Let’s look at each one shall we.

Screening or Symptoms?

During the early stages of PC a man will have no symptoms. The only way to discover the early stages of the disease is through testing. You will find arguments both pro and con from members of the medical community on whether or not men without a family history should be tested early or at all. Educate yourself. I will flat out tell you that I think every man should be tested at least by age 50, and earlier if you have a family history. If the test is positive, you will have many options. It may need to be treated, maybe not, but you need to know.

If by chance you go to your doctor displaying several of the symptoms pointing to PC, you are in a bad place. I will not go over the symptoms; you can Google them. I pretty much had them all. When I approached my primary care doctor with my concerns, he told me I was too young to have PC. I was in my mid 50’s. He added that I had no family history.

Well when I learned that in fact I did have a family history, the tests were done. I had cancer.

If you have symptoms before being diagnosed you most likely have a disease that has metastasized.

I have seen many doctors over the past four plus years. When talking to the doctors I have noticed a change in demeanor from a couple of them when they learn that I had symptoms before diagnosis. They realize that my situation is going to be tough, but they do not want to speak those words. I see it in their faces.

If found early PC is very curable, but when not found early it is not.

Be PC aware and get screened.

Gleason Score

Now I am not going to get all medical on you here, so if you want to learn how they calculate the score you can also look that up. I am trying to keep this essay under 10,000 words. Really, I am trying.

I just want you to know that the highest number the Gleason Score can be is 10. It is a number that tells you and your medical team how aggressive your cancer is and what treatment protocols should be considered. Gleason Scores of 8, 9, and 10 are the most aggressive cancers. These are the cancers that kill.

My Gleason Score is 8. Damn!

Curative Treatment

Once you have a Gleason Score you and your medical team can talk about treatment options. I chose surgery as my curative treatment. I had several reasons for choosing surgery. One was that the gland had gotten so large that it was causing a considerable amount of pain. I wanted the bastard gone.

The goal of surgery was to remove the cancer and cure me. Around two months after surgery I was tested to see if any evidence of cancer was present. What they look for is the presence of a protein that is only produced by the prostate. It is called a prostate-specific antigen, or PSA. So if your gland is gone you should not have a PSA number. The problem is that prostate cancer cells also produce PSA. They are concerned with any PSA number showing up after surgery, even a fractional number. If you have a number you still have cancer.

I had a number after surgery. It was rather high. So high that if I still had a prostate they would want me tested for cancer. Damn!

My oncologist thought that number could not be accurate. He had me tested again two weeks later. So I had two tests after surgery, both of which showed a very high PSA. Damn!

So we moved onto the second attempt at a cure which would be more than 40 radiation treatments along with hormone therapy. It is also called androgen deprivation therapy or ADT. The drug used was Lupron.

I loved my radiation oncologist. We sat down together many times and had long discussions about my disease. I greatly appreciated the time she took to help me understand what was happening.

She told me that she normally did not radiate men with a PSA number after surgery as high as mine. I said humor me doc and make those lymph nodes glow. She did.

When it was all over and the tests were repeated, I again had a number. The hormone treatments combined with the radiation did not quite work as well as hoped. They beat Brutus up pretty good, but he got up off the mat. The curative treatments of surgery and radiation did not work. My cancer was not curable. Damn!

Many men will have a PSA of 0 after curative treatments. They are cured or have at least gone into remission. If their cancer does return, then how long they were in remission often is an indicator of how well they will do going forward.

I did not go into remission. I have what they call persistent disease. The outlook for men with persistent disease can be tough. The doctor referred to my disease as being systemic. Whatever the hell that means. Come on doc speak English.

Dr. O explained that Brutus was in my blood and in my lymph system. He had spread throughout my body.

So we decided to aggressively treat the disease using a combination treatment or what I like to call a drug cocktail. Shaken not stirred please.

I would stay on the poison Lupron, and I would also take the poison Zytiga along with Prednisone. Clinical trials have shown men using this protocol had their disease slowed down substantially and I was hoping that I might even see a remission with this combo. I hoped that the side effects would not be bad.

I took those drugs as long as I could, but the combo was making me sick. I no longer wanted to be sick. I told the doc that I was done. When the drugs worked their way out of my body I started feeling so much better. Now I deal with discomfort from time to time, but that has mostly been manageable.

Doubling Time

The doubling time is how long it takes the PSA to double. It is the growth rate of untreated disease. Of course you cannot know your doubling time when on treatments.

Since I was off treatments we could track the doubling time.

About six months ago my urologist mentioned that the numbers were rising too fast and we might need to think about going back on treatments.

Three months ago my urologist told me that it was his advice that I go back on treatments immediately. The growth of my cancer was too fast.

I agree with the fact that the rate of growth is fast. I see the numbers. I did not agree that I needed to be back on treatments. I told him no.

Once you have been through the curative treatments the doubling time of your PSA is the single best indicator of your prognosis. The PSA number itself is important, but what is even more important is the growth of that number.

Of course you want your doubling time to be as long as possible. Some men’s PSA might have a doubling time of years. Others are not so fortunate.

The doctors get very concerned when the doubling time is less than twelve months. Of course the shorter the doubling time, the more aggressive the disease and the harder it becomes to treat. My doubling time is three months. Damn!

My medical team is a little concerned. I figure that sometime Brutus is going to get tired and slow down. At least that is what I hope.

Now let’s talk about my last visit with my urologist last October.

We talked about the numbers. We talked about the doubling time. Then he hit me with it.

U3 told me that I would live longer by going back on treatments now. I knew that he might be correct. I also knew that he was not telling me the entire story. I was prepared.

I knew what the research shows, that yes my survival might increase, but by only a few months.

I explained to the doctor that I understood what he was proposing might extend my life. IT MIGHT GIVE ME A FEW MORE MONTHS! That was all that it would do.

The doctor replied, “That’s accurate.”

I told the doctor that if he could tell me that going back on treatments now would extend my life for five years, then I would do that. I told him that he could not tell me that. He said nothing.

I know that going back on the treatments will make me sick. I want to enjoy what I have now for as long as I can. I see no need to be sick now and if things do not turn out well, also be sick at the end. It is not worth it to me. I told him that I was not taking the drugs. He told me that he understood.

We will continue to watch my numbers. When it reaches my target number I will go back on treatments. That is what we agreed on months ago and that is the plan we are sticking with. My doubling time was not going to change my plan. I told him that I would see him in three months. Which again is now only a couple of days away, but who is counting?

That visit with U3 was not so bad. I was not looking forward to my visit with my oncologist, Dr. O. Dr. O never wanted me off treatments. He stopped pushing when he realized that he was not going to change my mind. I was afraid that he was going to make an “I told you so” kind of statement.

On the afternoon of December 11th, 2019 I sat in Dr. O’s office around 3:00 with a lot on my mind. But one thing I didn’t bring with me that day was the anxiety that I often feel when in his office.

I started thinking about the wise old urologist, U2. I was going over in my mind some things that U2 had told me about my cancer. Most of what he told me has turned out to be very accurate. He never recommended the combination treatments like Dr. O. He told me that I would never see a remission. He was right. I hope it turns out that he is wrong about some other things he told me.

One thing I wished he would have done was communicate better with Dr. O. Hell they did not communicate at all.

That is one thing that Dr. O and U3 do well. They share information they have learned from my tests and visits. When I went to see Dr. O I was afraid that I was going to have to go over point by point with him what I had told U3. It turns out that I did not have to do that.

I was moved into an exam room and the nurse took my blood pressure. I do not know why they do that. Sometimes my BP has been so high that I was surprised that they did not walk me over to the ER across the parking lot.

My BP was normal. It was actually better than normal. It was the best BP I had seen in years. Christy slapped me on the leg and commented about how good the reading was.

I did not say anything, but the thought going through my mind was that is what happens when you no longer give a fuck. When you no longer give a fuck things do not bother you. At that moment I did not give a fuck about Brutus or this meeting. I was going to listen to the doctor then say what was on my mind and leave. Easy peasy so I thought.

When Dr. O walked into the room the first thing he did was give me my results from his lab. Like U3’s lab the results showed a very fast doubling time.

He knew what U3 and I had talked about. He went over most everything point by point. I did not have to say anything.

What he said next was unexpected and caught me by surprise. Dr. O said the following:

“Going back on treatments now will not help you. You will not gain any additional ‘Survivor Benefit’ at all, none what-so-ever. The only thing that going back on treatments now is going to do is make you sick.”

As I listened to him he explained that my treatment goals should change. Going forward the emphasis would be to reduce my discomfort and pain in an attempt to give me the best quality of life possible. We were done with combination treatments. What that meant to me is no more drug cocktails.

He talked about going back on hormone treatments when Brutus had reached my target number. We cannot stop Brutus, but the hormone treatments can slow him down.

Dr. O was describing palliative care or comfort care. He was no longer advocating what I would call aggressive treatments.

Once Brutus develops a resistance to the hormone treatment, we will still have other options available. We will once again revisit the chemo option. Maybe there will be a new immunotherapy option. Right now for men like me, an immunotherapy treatment is not yet available that is very helpful, but several clinical trials are ongoing that might help a person like me. You never know what will happen in the cancer world tomorrow.

After leaving the doctor’s office my thoughts again took me back to that conversation I had with U2: The no remission conversation. He told me that he has had patients like me. He said that a few of them survived ten years. I did not ask him how many he considered a few. I let it be. I understood what he was trying to tell me.

Later I learned that one percent of men like me survive ten years. When he said “a few” he was not kidding.

The reality of my situation is that I am not well, but I am not sick. I am happy about that.

Brutus will try to take away my physical abilities. He might succeed, but it will not happen today or tomorrow. In the meantime I have a lot of life I would like to live. What will be, will be.

I had a conversation recently with my sleep doctor. No he does not read me bedtimes stories. He did give me a machine that helps me breathe and I do sleep better. Maybe another day I will go into more detail about that.

I always enjoy my visits with him. During our last appointment we talked about the holidays and our families. Then we talked about cancer.

He said that every time he saw me that I had so much energy and such a positive attitude. He told me that cancer was not going to beat me. Did I mention that he was my favorite doctor?

He is correct. Cancer will not beat me. As I have said before, you beat cancer by the way you live. Right now the score is Brutus 0 and Kevin 1,625.

I am winning.

I Am Sure About That…

Kevin

Survivor?…Don’t Give Up

Posted on October 22, 2019 by dearcamden2016

I have been asked a time or two about how long it takes me to put together one of my essays. Most of the time it does not take very long, because often I have worked on the idea inside my head for quite some time before putting it on paper. It flows quickly.

Sometimes I am working through an idea and I just write. Throwing mud and seeing what sticks, so to speak.

I also do a lot of writing that you do not see, and probably will never see. I write about what I am thinking and it often just stays in a file on my computer. When I am gone my kids will have them to read. If Erin later wishes to put them on the blog that will be fine. They will be hers to do with what she wishes. This was going to be one of those pieces.

The idea for this essay came to me while preparing for the Zero Prostate Cancer Awareness 5k Run that my doctor’s medical group sponsors each year. The race is run in Wichita on Father’s Day weekend. I think the first time we participated was 2017. In 2018 I wrote some things down, but never finished. I was not sure I was ready to share. The essay stayed in the file to be kept for when I am gone.

I have come back to this essay a few times this year. The last time was in June. Looking over it and adding and subtracting. Each time that I wrote I could not get the piece completed to my satisfaction. I put it away.

Just a few weeks ago my girls and I ran the Zero 5k Prostate Cancer Awareness Run in Kansas City, Kansas. That again got me thinking about this essay. It was time to finish. I decided to take it out of the file.

This piece is a combination of several thoughts that I have edited and turned into one. It has taken awhile. Here we go.

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Today is Sunday, June 2, 2019, and it is National Cancer Survivors Day. I sometimes feel at odds with the mainstream thinking on the different verbiage used to describe a person with cancer and their “cancer journey.”

My thoughts are that often the words and metaphoric phrases used by non cancer people do not describe me or provide a very good explanation of what I am going through. Often these words or phrases try to minimize what people with cancer are dealing with.

“You got this!”

Well, no. Actually I do not. You can move along now.

I think I understand why these words and phrases have become so popular. They are easy. These are fallback words that people rely on when they do not know what to say. They want to turn a negative into a positive and cheer up their family member or friend. I really do appreciate the effort, but I feel they are often misguided. I think there is a better way.

I will in the future write an essay on talking to someone you care about with cancer. But that is not what this essay is about today. Well maybe it is just a little.

Before moving on to the main topic I will share with you one thing I think is very safe to say to a cancer patient. I would love to hear it myself actually.

“Kevin, your ass sure looks good in those jeans!!”

I have not heard that yet so you could be the first one to tell me. You could lie. I am okay with that. It would cheer me up, and of course make me laugh.

All kidding aside I would now like to talk about just one word that is used often in the cancer world. That word is: Survivor.

Each year that I go to the doctor’s office to pick up everyone’s race packets and gear I am asked if I am a survivor. Survivors are given different shirts so they can be picked out from the crowd. I am not real comfortable with that, but what the hell.

The first year I was picking up the packets that survivor question surprised me. I thought for a moment and I then told the lady that no, I was not a survivor, but that I hoped to be a survivor one day.

She then asked me some other questions and handed me a survivor’s shirt. She told me I was a survivor. She explained that everyone with cancer no matter where they were in their “journey” was considered a cancer survivor. I took the shirt.

I have thought about that conversation a few times. Hence the reason I have started and stopped working on this essay several times.

I realize that many people identify with being a survivor. I am not writing this in an attempt to change their self image. If that works for them, that is great. I will support whatever helps people get through the mental challenge of dealing with cancer. Many people have been cured. They are survivors. I am so, so, happy for them.

I do not feel like a survivor. I do not consider myself a survivor. If someone else wants to call me a survivor, I will not correct them. If I am asked privately I will let them know my thoughts.

To me, something happens and when it is over you have survived. If it does not end you have not yet survived.

I have survived many situations in my life. Sometimes when it is over I wonder how the hell I survived. But I did.

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One November night many years ago a business was being robbed just two blocks from where I was. When I arrived and I approached the business l learned that the robber had just fled and the manager of the business, who had just had a gun held to his head during the robbery, pointed in the direction the robber ran. I had an idea where he might be going. I had arrived so quickly that I thought I had a good chance of finding him.

I pulled down a street that ran in front of an apartment complex. I thought that might be where he was going. Sure enough he emerged from a dark field into the light. He wanted to get to the parking lot where his partner and getaway car waited. What he did not know, and which I later learned, was that when his partner saw me he drove off leaving the bad guy on his own.

I hopped out of my car to confront the bad guy. I forgot to put my car in park. So my car continued to roll down the street. So excuse me bad guy for a second while I hop back into my car and put it in park. Okay that is taken care of and now I can deal with you.

In the bad guy’s mind I was blocking his getaway. He had to go through me.

I was telling the bad guy what I wanted him to do, but he just ignored me. He was walking straight toward me. When he got close enough I reached out and grabbed him. The fight was then on.

Now this man was taller and heavier than me. But that is not unusual. Hell many people are born taller than I am.

When I grabbed him he punched me in my right eye. Thankfully that was before I wore glasses. You do see a big bright light when you get punched in the eye.

The fight I imagine did not last that long. To me it was a long time. We punched and kicked each other. I was having a hard time keeping control of him. What the hell am I saying? I never had control of him. I was just trying to stop him the best I could.

During this fight I knew that one of us was going to get hurt.

I do not know where it came from, but I heard a voice inside my head and this voice spoke to me.

“Kevin! You are going to get shot, but you will not die! Do not give up! Do not let this man get away!”

The fight continued. Then I heard the voice a second time.

“Kevin! You are going to get shot, but you will not die! Do not give up! Do not let this man get away!”

The bad guy started to pull away. I could no longer hold on. Then came the shots.

I do not know what was going through Christy’s mind when the supervisor showed up at our front door. He was there to take her to where I had been taken. He was/is a very good friend of mine. We are neighbors. He lives across the street. I think that made it easier for Christy to be with someone she knew. Thankfully we had family in town visiting who could stay with the kids.

I do not know what Mitch told her. I do not know what they talked about. After all these years we have never talked about that. Maybe one day we will.

In my line of work you live with the knowledge that bad things can happen at any time. It is not something that you constantly talk about with your spouse. We both knew the danger.

When Christy walked into the room she saw that I was okay. We hugged and kissed.

I survived that night. The bad guy died. I am not proud of that. I wish that it never happened. I wish that I could have controlled that situation better.

That confrontation had a beginning and an end. I survived.

I have had three cancer surgeries. I survived.

I have been through radiation. I survived.

I have had poisons injected into my body. I survived.

I have taken pills daily that make me sick. I survived.

But until I am told that my advanced/incurable/terminal cancer is cured then and only then will I consider myself to be a cancer survivor.

Until that happens I am just a man. A man who happens to have cancer, and like most men I am trying to get through each and every day the best I can.

Many mornings as I am putting on my suit or sport coat and tie that voice at times can be heard once again inside my head. This is what he says:

“Kevin you have cancer. But Brutus is not going to take you today. Do not give up.”

With that thought in my mind I straighten my tie and I smile at the man in the mirror. Winston tells me that I am looking sharp and then out the door I go ready to enjoy the day and live my life. Then I ask myself if Christy is happy. Because if she is not happy well you know how that goes.

Winston also told me that my ass looked good in my jeans so I guess you will not be the first to tell me after all. Thanks Winston.

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Recently I was again tested to see what Brutus was doing. If you remember last time I was tested that my doctor, U3, was concerned because Brutus was growing so fast.

I got the results on October 15^th. They were not good. Brutus continues to grow at a high velocity. I was concerned what the doctor might say when I saw him the next day. I suspected he was going to tell me that it was time to go back on treatments. Damn!

I saw U3 on October 16^th. We had a very informative visit. I informed him on what was going to happen.

I am not going to go into the details today on what happened during our visit. I will soon write an essay about what has been going on and what the next steps are.

The doctor did tell me that it was his advice that I go back on treatments. NOW!

I told the doctor NO. I told him that for now I was not going back on the poisons. I gave him my reasons and he told me that he understood.

I did not lose that November night and I do not plan on losing to Brutus. As I have said before…how you live your life is how you beat cancer.

In a few days I will be on my way to Kentucky to see my Tigers pound the wildcats in a football game. I hope the Tigers left the team they took to Nashville in Nashville or else I am going to be pissed.

Win or lose it really is not the game itself that is taking me to Lexington. It is the chance to spend time with friends. I want to enjoy my life while I am still feeling good. My doctor gets that.

When I picked up our race packets before the October 6^th 5k race in Kansas City I noticed that the forms they had there for me to fill out had a better description on how I see myself. The box I checked had patient/survivor. I think that is more accurate. I feel that there are many people that feel like I feel. They gave me a shirt to indicate that I was a patient/survivor.

After crossing the finish line at that race I was greeted by a woman who congratulated me on running the race. She then congratulated me on being a cancer survivor. It was the shirt. I said thank you.

As I continue down the road with Brutus I do not believe that calling me a cancer survivor is correct. But like I told the lady at my doctor’s office I hope to one day be one. What will be, will be.

No matter what happens I will just have to continue winning each day.

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I have been running basically the same course in my neighborhood for 28 years. I run in the grass because running on hard surfaces causes my Achilles tendinitis to flare up. I know where all the holes are. Occasionally I find a new one.

I run through a church lawn and one day I saw they had a sign in my path. I figured it probably said: Kevin, keep off the grass. It did not.

It said: Don’t Give Up.

Now when I run through the church lawn I reach down and I will touch that sign. I then say to the voice inside my head:

“I Will Not Give Up.”

Kevin

Cancer Patient

Looking Good….Feeling Good….Winning

Posted on February 17, 2019 by dearcamden2016

I walked into my oncologist’s office this past Wednesday, February 13^th and after saying hello the first words out of Dr. O’s mouth were “Looking Good.” I was thinking, “Well I know that doc.” Then I realized that he was talking about my numbers.

My urologist, U3, checked my numbers in January and they were down. Excellent! Dr. O is checking me in February. The test results show that my nemesis Brutus is still with me. He keeps fluctuating. We will continue to keep an eye on him. I am not worried at the moment.

Dr. O appeared to be a little confused. He basically did not understand how I could be doing so well. He shrugged his shoulders and moved his hands toward the sky with his palms up.

So we talked. Let me get this straight doc. Since I am not on active treatment, like you had requested, you do not understand how I am doing so well. Maybe it is because I am not on active treatment. He smiled. He told me that for now we would continue with doing nothing. That is correct doc. I agree that is what we are going to do. I appreciate the consultation, but Dr. Bad Ass Brown already knew what was going to happen.

He asked about my pain. I reminded him that Dr. Bad Ass Brown does not have pain. Just discomfort. I told him that when the discomfort hits that I have been taking more medicine than he had originally prescribed. One pill just does not help. The increased dosage helps with the discomfort. Also the discomfort has not been as bad the last few months. So we were good there. I told him that I was feeling good, and that I was happy.

We set up another appointment. As I was leaving I wanted so badly to tell him that if needed I was available for other patient consults. Sometimes with humor I try to make a point. I decided to shut up. It was so hard not to make that statement.

“Looking good” is a common statement I hear from people that have not seen me in a while.

I do have to ask myself a few questions once I hear that comment. Does this person not realize that I am Kevin “MF” Brown and that I always look good? Right Sharon!?

Are they making the comment because I look good for a 59-year-old? Is the comment being made because I look good for a man with cancer? Bingo, I think we have a winner.

What people do not realize is that a person’s outside appearance tells them nothing about what other things that person might be dealing with inside their body. I look good. I have been feeling better. BUT, I am not well. I have cancer. For now it does not appear that it is going to change.

I will never get tired of hearing people tell me that I am looking good. It reinforces my idea that I am winning. I still have the upper hand. Brutus will just have to wait for his day.

Sorry, but I am going to interrupt this essay for a moment to discuss another deep investigative journalistic question that people seem to want to know. No, I do not color my hair. I cannot tell you how often I have been either accused of coloring my hair or asked if I color my hair. No I do not. Stop being a hater. If you look closely you can see some gray. Look closer.

I have been blessed with my grandfather’s hair. When he died he had a full head of dark hair with just a little gray. I inherited his hair. I also inherited his cancer. So with that in mind I would rather be bald without cancer than have dark hair with cancer. I would take a bald no cancer Kevin any day. ANY DAY! Now back to regular programming. Where do I pick up my Pulitzer?

During the summer of 2015 around 1,303 days ago I was sitting in my family doctor’s office talking about my tests results. He let me know that the results were not good. He did not need to wait for the results of a biopsy or any additional scans. He told me that with a number that high that I had cancer. A biopsy later confirmed the cancer, and the process began.

Since then some days have been good, some days bad, and some…oh well I was breathing. No matter how you feel the day still happens. With the passing of each day you have a sense of victory. You put those days together and it looks pretty impressive.

I am kicking Brutus’ ass. Look at the score. I took the picture Friday when the score was 1,301 to a big fat 0 for Brutus. I have won each and every day and I do not see that streak coming to an end anytime soon. Now some of those wins have not been pretty. I along with my team have made some errors, but I will take the “W” no matter how it comes about. Brutus, well he needs a closer to lock down the late innings. He has not yet found one.

As for my team we just try to play the best game possible waiting on our chance to score. Hit and run. Steal a base. We do whatever it takes knowing the importance of the moment. We have done well.

In his great speech Stuart Scott talked about living and dying with cancer. He said the following:

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live.”

With that in mind I know that I will beat cancer. I also realize that one day Brutus will probably go from 0 wins to 1.

Some say that when a cancer patient dies that they have lost their battle with cancer. The idea that you lose to cancer is wrong. How can you lose when the score is 1,303 to 1? You do not lose.

You win by showing Brutus that you are not afraid to live. You win by living the best possible life you can each and every day.

That is how you win. That is how an advanced patient beats cancer.

I have decided that I am going to try to change the focus of future posts. I want to move away from talking about how I am in a medical sense. No more talk of doctor visits and test results. I want to focus more on how I am beating cancer. I want to focus more on how I am living. More essays for my kids and grandchildren to have for future memories.

I will continue to write about cancer and my thoughts about the process. I just think for a while I want to stay away from talking about where I am in my process. We will see how that works.

So in the future if you have a question on how I am doing I want you to remember this:

I look good. I feel good. I am winning.

Kevin

Hard Questions……Tough Answers

Posted on February 10, 2019 by dearcamden2016

“Dad, have they told you how much time you have?”

That is the question Amy asked me recently while she, Allie, and myself had a meal at a local restaurant. Before I attempt to answer that question let me rewind for just a moment and explain what has happened the last few weeks and how we had arrived at that moment, and that question.

A few months ago Amy asked me if I would be willing to do her taxes one more year. I told her that I could help her out, but that she needed to come home and bring with her all the information I would need. I also told her that she was going to sit with me and learn how to do this herself. Her taxes are so easy.

When she arrived in town we went out to eat. I never thought that I would ever have a conversation with Amy where the topics were death and taxes. More specifically my death and her taxes, but it happened. Death and taxes cannot be avoided. So they say. I am just going to try to kick it down the road a little farther. My taxes! I will send a check on April 15^th.

So we first talked about her taxes. Amy changed jobs this year and so she worked most of the year in Kansas, but a small part of the year she worked in Missouri. I pointed out that she needed, or I should say we needed, or better yet let’s get down to what was really going to happen and that I needed to file state returns for her in both Kansas and Missouri. Amy looked at me and said: “Really?” Yes little girl, really.

After taxes she had some additional finance questions. We talked about her 401k that we had set-up, and we talked about the benefits of a Roth 401k. You know it was just a regular night talking adult shit at Applebee’s. I kept my Mountain Dew intake down so not to get hopped up and go all Spider monkey on our waiter, Chip. Have you ever been kicked out of an Applebee’s? I will save that story.

Eventually the topic turned to my health. Sooner or later it always does when I am with one of the kids. You see Amy knew that I had recently had my usual tests completed and that I had seen my new doctor to review the results. After that visit the kids were told that things were going well. Amy took this opportunity to ask for more details. Damn.

What these recent results show along with the results from the past few months is that Brutus grows for awhile and then he shrinks. Shrinking is good. So for now I can continue to stay off treatments.

I shared with Amy over Mountain Dew, chicken nuggets, and fries what happened when I saw my new doctor.

Hold on a minute I know that at this point Cammy will have a question. Let me answer. Yes Cammy, I will buy you some chicken nuggets when I see you. Promise! (That boy loves his chicken nuggets.) I will take you to DQ for chicken nuggets, and a chocolate Peanut Buster Parfait!! I am feeling a little hungry right now. How about you? Okay back to the doctor.

I went over the results with the doctor, and I told him that most of the time I was feeling really good. We talked about the tumors shrinking.

I was sitting down and all of a sudden I stood up and I raised both arms into the air and I looked the doctor right in his eyes and I said to him, “I am cured!” This was a test.

You see Dr. U never liked talking about anything negative. I was hoping that U3 would be a doctor that would handle the tough times with candor. I do not want a doctor who wants to avoid the hard questions and not provide the tough answers. I was a little surprised about what happened next.

There was a moment of silence as I watched the expression on U3’s face change. I have not seen that look on a doctor’s face since Dr. U told me that I had been misdiagnosed and that my cancer was much more advanced then I had been told and that he had great concerns for my welfare or health or something like that.

U3 had that bad news look on his face. He might also have been wondering if I was a little delusional, or maybe no one had explained to me what I was up against, and now he was going to have to tell me. Or would he? That was the test. I will paraphrase what he said. Now this is very close to a direct quote, maybe a few words different.

The doctor looked at me and said: You have metastatic cancer. Your numbers could blow up tomorrow. I am glad that you are feeling well. Enjoy this while you can, because it will not last.

WOW and DAMN…DAMN…DAMN!

You think maybe a little too much candor? No, in my situation I think there can never be too much candor. I wanted to see if he would level with me. I wanted to see if he could be trusted. He passed the test. Thanks doc.

Now I do think that in the future I am going to have to talk to him about his word choice. That word “metastatic.” That has got to go. I do not like it. It sounds sooo bad. I am thinking that he should use the word that other doctors have used and that word being, advanced. You know you can be an advanced swimmer, advanced student, or have an advanced IQ. Which I am none of those, but I have an advanced disease. I like that better. We will talk. Moving on.

I asked the doctor if he thought I could remain off treatments for all of 2019. I asked because I already have a lot on my calendar. A couple of fishing trips, Table Rock Lake trip, baseball games, Alaska, a trip to the homeland and who knows what other opportunities will present themselves (like visiting the newest baby Heger in KC).

I guess one of them will not be a Missouri football bowl game. Damn NCAA. Maybe my anger should be directed somewhere else. Let me think about that a moment….Nope. Damn NCAA.

I really cannot think of a good time to ever go back on treatments, but especially this year. I do not want to sit on my butt at home. I want to get out and live. Looking at my schedule I do not have time to be sick.

I was looking at the doctor waiting on him to answer my questions about treatments. He did not look very comfortable. I could tell that he did not have the answer that I really wanted to hear. I guess I should not have asked such a hard question. He was having a tough time with his answer.

He looked at me and then said, “Maybe.”

We exchanged smiles. I knew what he meant. I know that he wants me to be able to cling to a little bit of hope. I will.

Before leaving the office an appointment was made for April. Then we will do this all over again. We talked about a new set of scans to be done in April. Damn.

As we go forward moving through time I know that things will change because nothing stays the same in the cancer world. They say that time marches on, but for me and people like me, our fear is that time is running out.

That brings us back to the question that Amy asked, “Dad, have they told you how much time you have?”

I have an answer to that question. The answer itself raises other questions.

I have talked to Justin and Erin in the past about Amy’s question. Justin and I have probably talked about it more in depth than I have with the girls. Amy has never really brought it up. I would imagine they have talked to each other.

They could ask Winston. Winston and I talk so he knows everything. Winston is such a good listener and is never judgmental. You can learn a lot from a dog.

Amy’s question is one of those questions where you think you might want to know the answer, but you really do not. If you do not know then you do not have to face it. The answer cannot hurt you.

I asked Amy a couple of questions to make sure she really wanted to get into this discussion. She did not. She decided that what she wanted was to think that I was going to be around for fifty more years. We left it at that. You see Amy is a lot like me. Let me explain.

I have a book sitting on my bookshelf directly behind me as I am typing. The book is titled, “Tuesdays with Morrie.” I read this book several years ago. Or rather I read most of the book several years ago. Many of you are probably familiar with the book and know that Morrie dies. I enjoyed Morrie so much as I read the book that I did not want him to die. I found myself refusing to read the ending. In my mind Morrie would stay alive. He would still be teaching life lessons. I later finished the book.

I did not want to confront the ending of Morrie’s story, nor does Amy want to confront my last chapter.

In a few months we will be entering the fourth year of my life with Brutus. When you look into what I consider to be my timeline we have gotten really deep into this process.

Erin, Justin, Amy, and Christy are the most important people in my life. They experience their own pain and have their own fears as they try to deal with what has happened and what will happen. I want to help them get through the last chapter.

Take a moment to read these words from Morrie:

“If you hold back on the emotions – if you don’t allow yourself to go through them – you can never get to being detached, you’re too busy being afraid. You’re afraid of the pain, you’re afraid of the grief. You’re afraid of the vulnerability that loving entails. But by throwing yourself into these emotions, by allowing yourself to dive right in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, ‘All right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.'”

Amy, when you are ready with your hard questions I have answers. Remember that we will hope for the best, but we must be prepared for the worst. It will be tough, but we will get through this together.

Love,

Dad

I came down with the flu recently, and while I was recovering Amy
and Allie took advantage of me not being myself and ganged up on me to
win several uno games. Good thing they were not sanctioned games.

Choices

Posted on November 19, 2018 by dearcamden2016

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?

Posted on September 17, 2018 by dearcamden2016

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 14^th. 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?

Posted on August 12, 2018 by dearcamden2016

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 22^nd 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 22^nd, 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

Facts

Posted on June 3, 2018 by dearcamden2016

Facts! You have them or you don’t. I am a fact gatherer. That is my job, but many days the facts that I need are hard to come by. Sometimes I have to use the totality of the circumstantial evidence in order to try to explain what has happened to get a case charged. Prosecutors like facts that are more indisputable, you know, what they call evidence.

Evidence such as photographs found on the bad guy’s cell phone, recorded interviews, DNA evidence, the results of medical tests. That type of evidence or facts is harder to dispute.

Prosecutors do not like hunches, gut feelings, or suspicions. I have to tell families that it is not what I think happened, but what I can prove happened. What theories or hypotheses I might have always go better with evidence.

Now, having a gut feeling or suspicion that something is not right will drive me to work harder to develop the facts. Sometimes it just takes time.

My medical team also likes to deal with facts. You know, such as the fact that no matter which doctor I am seeing they each want me to pee in a bottle at every visit.

Conversation goes something like this: “Mr. Brown would you please pee in this bottle.” “If you hold it still this time I will.” The bottle people!! The bottle!! Get you head out of the gutter.

Sorry attempt at humor, I know.

Anyway, not having the evidence or needed facts can be a problem for my medical team.

If you remember, last time I spoke about the theory developed by my urologist concerning the spread of my cancer. It sounded good, and made sense. Three of the four doctors working on my case at that time agreed it was possible. My oncologist does not agree.

Dr. O wants more facts. He needs evidence. He still wants me to have the second surgery and have the surgeon take out more ribs to hopefully find answers to what is showing up on the scans.

You know that surgery that I cancelled in April basically because I was pissed with the surgeon? Yes, that surgery. I agreed to meet with the surgeon to go over the post operation scans, and to listen to what he had to say.

When Christy and I met with the surgeon it was very different than past meetings. As soon as he walked in, he sat down and wheeled his stool over to me with pad and pen in hand. He sat next to me and explained what had been done in the past and what he wanted to do next. He spoke to me and not Christy.

He started drawing a chest cavity. He put in the ribs and talked about where the scans showed the areas that I had lesions that concerned everyone. He explained this would be a longer and more involved surgery.

We talked about Dr. U’s hypothesis concerning my disease. It made sense to him. He knew what he had seen inside my body during the first surgery, but he would also prefer to have more evidence. He said that Dr. O still wanted more evidence.

The conversation that day was at times gloomy. We all knew what Dr. U’s diagnosis meant if correct. I knew what treatments Dr. O was going to push. Damned if you do. Damned if you don’t. Cancer sucks.

He told me that he did not know if another surgery would provide the answers we were looking for. He told me that this was my choice to make. He did not need an answer now. He gave me his cell number and told me to text or call if and when I wanted to talk about the procedure. I told him that I would be in touch. We left.

On the way home it was a quiet drive most of the way. We were on the interstate and I was doing my customary 85 mph (I cannot drive 55). I looked over at Christy, and she at me. She started crying. I reached over and put my hand on her knee and told her that everything was going to be alright. She said to me, “I am having trouble imaging a life without you.” Wow. That hit hard.

She told me that she wanted me to do everything that I possibly could to stay alive. She let me know that I should not be so hard headed and might even do what the doctors ask of me from time to time. I thought I had been. Oh well. Different perspectives I guess.

Now I can deal with an angry Christy, and many times have. What I find hard to deal with is a scared and crying Christy. She had me where she wanted me. She had her say and calmed down. The car again got quiet.

As the drive continued my mind went back to the first time we met. It was near the end of April 1981 my junior year of college.

I was living off campus with my friend Ron Hall. It was a beautiful weekend day and finals would be starting soon. I knew that if I stayed at our apartment that I would not get anything done. So we played a game of ice ball to decide how we were going to tackle this conundrum of needing to study, but also wanting to do something outside.

While trying to figure this out we played ice ball in the living room until we ran out of ice. You know you empty all the ice trays and bags if you’ve got them and take turns pitching and hitting. We had a little bat and when we hit the ice we did not have to pick anything up. It just melted. If you got hit with the ice it did sting.

I do not know if I won or lost. It was hard to keep score during those games. All I know is when the ice was gone we still had not figured out how to avoid wasting the day. Playing ice ball is not wasting the day.

We ended up driving to campus to study at the library. That, I thought was going to be a big waste of my day. It was not.

If I had to be at the library I had a table where I normally liked to sit at which was hidden in the stacks of books. Friends knew of my table and would show up for a few words or sit down to also study. So many days it was like a party at the library, but with no one around to tell us to shut up.

That day in April was going to be different. You see, someone that I did not know was sitting at my table. She had not been invited, and even had books spread out. I was looking at her, and Ron asked if I wanted to go find somewhere else to sit. I said, “Hell no that is my table.” Also, she was cute.

I told Ron that we were going to sit there. I also told him that I would bet him a beer that before we left I would have her phone number. Ron took that bet. I now had a mission.

So we sat down and said hello. She moved some of her books to make room. Looking at her books I said to myself “Freshman.” At some point I started talking to her, and she played it rather coy. She acted like I was bothering her. Oh she was a stubborn one.

At some point the cute freshman girl asked me to watch her books while she went to get something to drink. I said sure.

She returned with two Cokes from the McDonald’s across from the library. I was and always will be a Pepsi guy, but hey I drank it.

I knew at that point that this girl wanted me. Why would she risk smuggling in a Coke for me if she did not want our encounter to continue? Drinks were not allowed in the library. If caught she could have been expelled from school (Maybe not, but it does make for a better story). She was taking a great risk to impress me. She could tell that I was worth it.

So while drinking the Coke I took that as study break time. We started talking more. At least I talked more. She was playing hard to get, you know. She looked more and more annoyed. Me? I have often seen women use this tactic.

Remember, I had a bud light riding on this encounter. I would not be deterred.

I told her of a party at Dr. Tom’s residence. He was a management professor who had become a friend and he was having an end of year party at his house. She gave me her phone number. Ron bought the beer.

So I later called and made arrangements to pick her up to go to Tom’s party. She lived in a dorm on campus. When I got there I called up to her room. At that time it was an all girls dorm. Men could not just walk around the place. It is so different now. Thirty seven years too late if you ask me.

Anyway she said that she would be right down. I waited and waited, but still no freshman girl. She was standing me up. Then she came through the front door. I was at the wrong dorm!

She tracked me down. I told you that she wanted me.

She lived over at the Laws, Lathrop, and Jones complex of dorms. They all looked alike to me, and I still do not remember which one she lived in. She found me.

We went to the party and had a good time. Had one more date that semester before she left town to return to her home in Carthage, MO for the summer. Her sister attended summer welcome that year and that freshman girl came with her to see me. She may have even brought a Coke. She wanted me.

My senior year started and now the little sophomore girl started to become a bigger part of my life. She wanted to be with me. I realized at some point that year that I wanted to be with her. The rest is history.

Camden, that is how I met your Nana, and it all started in April 1981, thirty seven wonderful years ago. Now I would imagine that the little freshman girl’s recollection of events might be a little different. Just remember, I have the facts.

What Christy was trying to tell me in that car ride from the doctor’s office was that she was not ready for our thirty seven year ride to end. So I better get with the medical program.

Later I decided to contact the doctor with some questions. I did not want to interfere with his work so I texted. He then called. We spoke a few more times and I then agreed to another surgery.

He wanted to do it ASAP. I said okay, but that I had a fishing trip planned and I would not let surgery interfere with that trip.

He wanted to know when I returned. I told him that I would be back in town on May 21^st. He thought that May 22^nd sounded like a good day for surgery. I was not terribly excited about the idea, but agreed. We got off the phone and a nurse called me later and told me to be at St. Francis at 6:00 A.M. on Tuesday the 22^nd. It was a done deal once again. I was back on the surgery schedule. I then went fishing in Colorado.

When I got home on the 21^st I made a short to-do list. One of the tasks on that list was to call mom. Maybe that one can wait. I know. I know. I should call mom, and I did. It was at the top of the list, but was the last thing checked off.

Sometimes, no let me restate that, I always hate talking about cancer with mom. I have tried to shield her from what has been happening the past few years. Whether that was right or wrong, it’s what I did.

Now she knows about this blog. I did not tell her about the blog until about a month or so ago. As a friend pointed out, I have been a bad son. I knew that someone would eventually bring the blog up in conversation with her. That is what happened. I did not tell her until I had to. How do you tell a parent that you are sick and might die? Walking that tight rope has been hard.

Recently she asked me if I felt that I would be able to beat this. I did not have to think about what was the best answer to give her. I did not hesitate or stall in giving my answer. I told her: Yes! YEs!! YES!!! I do think that I can beat this. I am going to beat this.

Whether that is true or not, I do not know, but that is the only answer you can give your mother. (Maybe she will not read this one.)

Life is so precious and in the history of the world we humans are here for so short a period of time with some people here shorter than others. Cancer patients hold no monopoly on dying before their time. It can happen to anyone.

Have I got you in a good mood yet?

In my job I have unfortunately been the witness to a few deaths. The deaths I have witnessed have normally been caused by acts of violence. They did not have to happen.

Years ago an entire neighborhood was out on a hot summer day, but instead of a neighborhood garage sale or barbeque they got into a big ass fight. I and a few other guys were sent to keep the peace. Right?

When I arrived I found this to be a very serious fight involving many people. Some had weapons.

I saw a man lying on his back on the ground. I walked over to him and discovered that he was having difficulty breathing. I let the dispatcher know that I need EMS and Fire with me, but they were not coming into this mess until I and the three other officers with me could get the fight under control and make it safe for them. I was on my own to try to help this man.

I knelt down beside him looking for injuries. I saw none. I saw no blood. He looked at me and wanted to know if he was going to be okay. I told him that he was. I really thought he was. His breathing was getting worse. He did not look well. I asked him what had happened, but he would not talk about what had happened. He just wanted to keep hearing from me that he was going to live.

He stopped talking all together and was gasping for air. I heard him exhale and a gurgling or rattling noise was coming out of his chest and into his throat and out his mouth. His body started shaking. Then everything stopped. His last breath had turned to air.

At the exact same time that I was witnessing this I saw a woman out of the corner of my eye who had walked up and was standing about fifteen feet from us. Her eyes were fixated on the man on the ground. It was like she was in a trance. Her arms were down to her side and I saw that in her left hand she held a large kitchen knife. The knife was resting against her thigh and was pointed down.

Seeing the woman with the knife, I had to get up and leave the man. I walked at an angle toward the woman so she could still see the man. My eyes were darting back and forth from her face to her left hand. I wanted to see if she was going to offer any kind of facial expression that might tell me her intentions. I did not want to get stabbed.

I grabbed her left wrist with my right hand. My left hand then grabbed her hand and my right hand slid down and took the knife.

She finally looked at me and asked if the man on the ground was going to be okay. I told her that I did not know. She told me that the man was her husband. That during this big fight he was attacked by some other men with a baseball bat. She had gone into their house to get the knife so he could protect himself. When she came back out, it was too late.

At this time Fire and EMS were with her husband. He was dead. He had been hit so hard with the ball bat that his aorta had been torn from his heart and he internally bled to death.

The gurgling noise that I heard was what is known as the death rattle. This was the first time I had ever witnessed a man die. It was the first time I had heard the death rattle. Unfortunately it would not be the last.

On that hot summer day all that man wanted from me was an assurance that he was going to live. I told him that he was. I hope that I gave him a little bit of hope before he realized that what I said was bullshit.

I hope that when I tell people that I am going to be okay, it gives them a feeling that I am doing well and confidence that they do not have to worry about me. I cannot help to feel that when I tell people that I am going to be okay, that I am once again dishing out bullshit.

Just like that man all I want is for someone on my medical team to tell me that I am going to live. That I am going to beat this. They have not. I do not expect to ever hear that. I guess they need more facts.

No one knows when their time will come, but death will take each of us at some time. When I play out the scenarios in my head I know that death will ultimately win. But not today! I will not let cancer win today. Each day before leaving the house I tell myself that today is my day, and I am going to make today the best day possible. Going forward, I will do what I think is best for me in order to live the best life that I can.

I hope this surgery will help answer some questions, because I am getting tired of them, and goddammit they hurt!

Before the surgery I wish that I had bet Christy a beer on how things were going to turn out. I have a good history when it comes to betting beers. I live with the evidence. That is a fact.

I will have a surgery update coming later.

Spoiler alert….I live.

Kev

Every One Is Right

Posted on April 28, 2018 by dearcamden2016

So Wednesday night I am home from the hospital wondering when the results of the biopsy/autopsy of my rib will be available. I have an appointment with the surgeon on Monday to learn the results. But do I really have to wait until Monday for the results? I think not.

Christy knows everyone in the pathology department. She will know Thursday which doctor will be assigned to examine my rib. She knows the head of the pathology department and has his personal cell phone number. I think we will know before the surgeon even knows.

The head of the pathology contacts Christy on Thursday. He tells her that the specimen was examined by one of his doctors and no cancer was found. He also examined the rib and found no cancer.

The doctor told Christy they had one more test to run and they would not know the results until Friday. Friday they told her that all tests were complete and no cancer was found. Yahoo!!!

I said, “So much for the cancer surgeon being so confident that my cancer had spread.”

This was great news. I was cautiously optimistic with the results. I am always concerned about what else could go wrong. It just seemed too good to be true with all the pain and discomfort I had been having. I was waiting for the other shoe to drop.

This time though I was convinced that was not going to happen. I had two pathologists saying they found no cancer. What more did I need?

With the pathology information and many people waiting to hear about the results I posted on Facebook that the tests were completed and Brutus was not found.

It turns out that I was a little premature in my announcement.

We went to KC to see the kids that weekend and had a good time. Except for the trip to Lawrence to watch KU play Villanova, that was not good.

So we get back into town and we have a meeting with the surgeon on Monday to go over the test results. I told Christy to pay attention to who the doctor spoke to while we were there. She did not agree that he had ignored me on our last visit. I told her to just watch.

So once there to meet with the doctor it was just the three of us in the room. No other white coats today. Once again he directed his conversation toward Christy. I found a cosmo something or other to read. I was listening to their conversation.

He spoke about the pathology report and that it was negative for cancer. He showed Christy the report. He did not show me. I was taking a survey I found in cosmo.

Christy told him that she had talked to the pathologist last week about the results. We were happy.

This is when the other shoe dropped or I should say a steel toed boot kicking me in the ass.

The doctor announced that he did not agree with the report. He said that lots of mistakes can be made through the process.

He explained that what he had seen during the operation was bone that had been damaged from cancer. He did not understand why it was not showing up on the other tests. He is a cancer surgeon and he knows cancer when he sees it.

Christy leaned forward and told him that maybe he was the person making the mistake.

Boooyyy things just got interesting. Christy was coming out swinging. She had the doctor backpedaling. She hit him with a right and then a left. She then threw in a hook to the body and an upper cut to the jaw. The doctor was trying to do the famous rope a dope, but it was not working.

The doctor looked at me and tried to engage me in conversation for the first time. His eyes said save me. I do not think he was used to someone questioning him.

I just stretched out in my chair and placed my hands behind my head. I needed popcorn. I was thinking you two go ahead I am fine right here.

Well when the bell rang, and she went back to her corner, the doctor continued.

He explained that he was a cancer surgeon. That is how he made his living. He knows what cancer looks like. I would have used the duck analogy but he continued saying that if it looks like a dog and barks like a dog then it is a dog.

He said that his belief was that the cancer had spread into my bones. He knew that is not what I wanted to hear, but that was what had happened.

Based upon the scans and what he personally saw inside me he said that I had metastatic prostate cancer in my bones. He believed that the disease had spread into several of my ribs.

During the conversation I then learned that he had taken my entire fourth rib. I thought that he only scooped out pieces. He said that the entire rib was diseased and he took it.

Now I thought that he had cut it out. But no, he explained that they have a special pair of pliers and that he just broke off pieces of the rib with the pliers until he had it all.

He then spoke about how he felt that I should have another surgery and that he should take the ribs from my right side that showed possible tumors and have them sent to the pathologist.

This was the surgery that I did not want. This was where several ribs would be taken and he would replace them with some sort of fake rib.

Christy was about to come out of the corner for the next round. I sensed that he felt another ass kicking coming and he pulled out his cell phone and had my oncologist on the phone in a matter of seconds. How did he do that?

He told Dr. O that he had Mr. Brown with him discussing the test results. I heard Dr. O say “Kevin.” It is good that your doctor knows who you are, but it probably is not that good. I sensed that they had already talked about my need for another surgery. Dr. O agreed with the surgeon that I should have the second surgery. They got off the phone.

The doctor continued with his passionate case that I needed the surgery. I gave in. I agreed to the surgery.

We left with the agreement that his people would call my people to set this whole thing up.

Walking to the car Christy made the comment that the doctor at first was ignoring me and only talking to her. I said that he only started talking to me when he became scared of her. I know exactly how that doctor felt.

That was on Monday. On Wednesday the surgeon tracked Christy down in her lab. He told her that he had been talking with several doctors familiar with my case and he had decided that he would rather again operate on my left chest area. That was still the area they were most concerned with. He no longer wanted to operate on the right side.

Once I received that news I called the doctor’s office. I spoke to the lady that does the surgery scheduling. I informed her that any surgery on my body was now cancelled.

He had convinced me that the right side needed attention, and then he changed his mind. What the hell was going on? Enough of this bullshit!! No surgery!

So let’s review what we have so far:

CT Scans and Bone Scans show the disease has moved into my rib bones.

Surgeon: He saw the dog and it was not a little dog, but a big cancer dog.

Pathologists: Well we found no dog.

Oncologist: He still does not want to commit at this time. Great! He is probably a cat person.

Urologist: He is not aware of what has been happening. It is time to pay him a visit.

I credit Dr. U with saving my life. He correctly diagnosed me when Dick did not and performed the cancer surgery.

When this all started, I went to see him for a second opinion and when we met he did a DRE that sent me to the ceiling. I had never had an exam like that. I thought that this meant we were getting married. Put a ring on it doc. I later lay on the exam table waiting on my cigarette. He then told me that I was in very bad shape and needed surgery NOW.

He told me that my cancer had spread out of the gland and that he was very concerned for my welfare.

Dr. U is a little older than I am and much older than my other doctors. He is my Wise Old School Doctor. We get along most of the time. He has gotten a little irritated when I have chosen to follow other doctor’s advice and not his. Still we’re good.

I had lab work done before seeing Dr. U and so the first thing we did when we met was go over the labs.

He gave me great news. He said that my PSA number was zero. He thought that I would never see my PSA drop to zero, but it had. Fist bump time.

Many times I have written about my lab numbers, but I have never explained what they are looking for. They check for several different things, but the main number they are concerned with is the PSA number which stands for Prostate Specific Antigen. A normal prostate will produce this PSA protein. Cancer will also produce PSA. So when you have surgery and have the prostate removed you should no longer have the PSA protein in your blood. If you do, it is a sign that malignant cancer cells have escaped the gland and are producing PSA on their own. I had a very high PSA after surgery. After surgery it should be zero.

Now the number had dropped to zero due to my drug treatments. I am scheduled to go off treatment. I asked how long the PSA would stay at zero. I knew that this was not a question he could answer. I was testing him.

He said that it would be zero until it wasn’t. We both laughed.

No one knows how long the number will stay depressed. It could start going up very soon indicating that Brutus was once again growing and spreading. It could stay depressed for a year, and then return. The drugs have shrunk the tumors to undetectable levels at this time. The tumors are dormant. They are not dead. Brutus will grow again.

We were standing in an exam room when I asked the doctor what he thought of the biopsy results. He pointed toward the chairs along the wall and said, “Kevin, have a seat.” Not good. He seldom calls me by my first name.

Dr. U does not like to be the bearer of bad news. He avoids it at all costs. His favorite way to avoid tough discussions is to say, “Let’s talk about that next time.” I have had to overcome that before and then turn into an interrogator to get information out of him.

We sat down and the conversation went like this. I will paraphrase. I had to pay attention. Christy was not there.

Doc: When we first met you were in very bad shape. Your PSA is zero today, but it will not stay there. You are not curable and the cancer will return. When it returns it will be in your bones.

Me: Say what doc!?

Doc: Every one is right. Your cancer has spread into your bones. The tests are correct. Your surgeon is correct. The pathologist is correct.

Me: Doc you are going to have to explain that to me.

Doc: The CT Scans and Bone Scans are showing where your bones are trying to heal from the cancer. Your surgeon saw the damage the cancer had caused. It is there. The pathologist could not find the cancer, but the cancer is there. They could not find it, because the drugs you are on have finally been able to get the upper hand and have shrunk the tumors. They have shrunk so small that they are not detectable to the pathology tests. Therefore, negative results from the test. The cancer is there in your ribs. I am sorry. We have drugs and they are coming up with new treatments all the time to help you survive.

The Wise Old Doc had seen this scenario before.

He told me that with hindsight he now believed that the cancer was in my bones before surgery. They were microscopic cancer cells and did not show up on tests. My pain is what has lead to the discovery of the spread of the disease.

His explanation made perfect sense. It definitely was not what I wanted to hear, but finally someone had made sense of what was going on inside my body.

We parted and before leaving the building I made another appointment to see him in a few weeks. At least I think I did. Things were a little foggy as I was leaving.

When I first started this treatment process dealing with the side effects of surgery, radiation, pills, and shots made me sick. The treatments were what made me sick not Brutus. All the complications I was dealing with were manmade.

Now things have changed. The pain I had been feeling in my ribs was caused by the cancer actually attacking my body. Brutus is trying to kill me from the inside.

This is devastating news. I have written about what this type of diagnosis would mean. I will not go over it again. I will just say that my prognosis is terrible, and I do not want to talk or think about it.

I purposely am posting this essay on the weekend so that the great people I work with can read it and adjust. Some might talk with each other. Some might text me. I know this will hit many of them just as hard as it has hit me. Well maybe not quite as hard as it hit me.

Cancer is chaos and I should not be surprised this has happened. It seems things change on a daily basis.

People will want to know what they can do for me. Right now I just need some space.

I am still trying to figure out what is next. It seems like I am on a never ending cycle of scans, blood work, shots, pills, doctor visits and picking up my dry cleaning. Cleaned, pressed and starched. You think I do that shit? Hell no.

Now if I could only figure out how to clean, press, and starch Brutus.

Kevin

Dear Camden

Living…Loving…Laughing

Tag Archives: prostate cancer

The Calendar

Are You Sure About That?

Survivor?…Don’t Give Up

Looking Good….Feeling Good….Winning

Hard Questions……Tough Answers

Choices

Why?

How’s Your Cancer?

Facts

Every One Is Right