Every One Is Right

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

Surgery

In the March 18th post I was talking about needing a rib biopsy and how they were going to give that a try in an attempt to avoid surgery. I had two meetings with the surgeon. The first was with just me and the second one Christy was there. The meeting with Christy present was so different than my meeting. Let me explain.

The doctor was a Via Christi cancer surgeon. Christy works for Via Christi in the lab at St. Francis Hospital.   She has a degree in Laboratory Sciences from the University of Missouri. She is a blood specialist and works with cancer patients who have leukemia and other cancer blood disorders. At St. Francis the color of scrubs you wear designates what part of the hospital you work. When the doctor walked into our room along with several other people in white coats his attention and focus went right to Christy. He could tell from the scrubs she was one of them so to speak. I am not ever sure if he knew if I was there. I was okay with that.

They started talking and it was like I had been sent to the kid table during a holiday dinner. I one time tried to say something, but I think the doctor raised his hand like do not interrupt the adult conversation. All I wanted to know was if they had a ball or something for me to do while they talked about my future.

I later asked Christy what he had said. She said that he told her that I was fucked. Hahaha. You know Christy did not say that. She never uses the F word. Well not often anyway only when she is really mad at me. Who would ever be mad at me? Do not answer that question.

Okay he did talk to me a little. I kid you not it was very little. I guess he needed me to agree to his plan. Christy was nodding her head so I said okay. The plan was to try a needle biopsy and if that did not work I would have surgery.

March 26th was the day they finally set up the biopsy at St. Joe Hospital. I arrived early that morning and met with the radiologist that was going to try to stick a needle into my fourth rib on my left side. Scans had shown that I had a mass, tumor, or lesions on both my left side and on my right side. The word choice, I guess take your pick. I have heard it called all three by different medical people.

They decided to do the left side instead of the right. They were more concerned with the left side because it was the most recent tumor/lesion to show up on the scans. The mass on my left side was very close to my heart and in the back of the rib bone up against my lung. It was going to be a little tricky for the radiologist to get that big ass needle, it was big, into the bone and not punch through it and hit the lung (bad) or the aorta (very bad).

The procedure was done with the use of a CT scanner. They would cut a little then place me into the scanner to see what they were doing and if it was going well. Take me out and do a little more work and then put me back into the scanner to see if things were good. In and out I went over and over. Yes I was awake during the procedure. They numbed me up and I really did not feel anything.

Parts of it were kind of funny. I had to laugh when they brought in what sounded like an impact wrench that you use to change a tire. I even felt my skin being twisted when they put that thing in me.

The doctor was trying to put the needle into me at an angle so that he would not go through the bone and into the lung or aorta. They had everything set up to get me into emergency surgery in case the needle slipped.

The only time it really hurt was each time he actually tried to penetrate the bone. The needle slipped off each time and I would move about a let out a yell. The doctor kept saying he was sorry and told him not to worry about it. I told him thatiIt did not hurt that bad, actually it did, but I wanted him to get it over with and be successful. He finally gave up.

What he needed to do next was to mark the rib so that the surgeon could take the correct one out. He actually put a treble hook into me. It was placed under the rib and a metal wire was attached to the treble hook. The wire would be several inches outside my body and the surgeon would follow the wire down to where he needed to cut. Fishing for ribs.

Now this is not how things were suppose to go. I had no idea that surgery would be done right after if the biopsy was not successful. I do not think the surgeon wanted it that way either. He was on a staycation with his kids. He had to come in on his days off to operate. Once that hook is put into you they have to operate soon. They wanted to operate the next day, but could not get me on the schedule. Wednesday would be surgery day.

I went to recovery after the attempted biopsy, but I wanted out of there. I was able to get them to let me go home. I was out of there by mid afternoon.

I needed to contact my supervisor, Travis, and let him know that I would probably be out of the office the entire week. The pain was actually bad. I was told not to move around so that the hook stayed in place. Like I was going to go on a run or something.

Christy had spoken to Travis and had told him what was going on. I still felt the need to communicate with him.

So I plugged Travis’ phone number into my phone and started texting him. Now in the past for some reason I have not been able to text him. So I started over from scratch and plugged his number into my phone.

This was the first message.

Now we like to have fun with one another and when he said this was not acceptable, I figured that I would play along. So I offered to work a half day. Like that was going to happen.

With his next response I started to get a little irritated and pissed. He was about to make my list.

It is common knowledge around work that I have a list of names that if I am ever told I have six months to live that you better hope you are not on that list. Travis worries that he is on that list. I keep him thinking that. He really is not on it. I like the guy, but he was getting very close to being on that list.

Then when he started talking about Christy I knew he would not go that far. I got to wondering who the hell I was talking to. I checked the number and the last digit should have been a five and I plugged in 6. I was not talking to Travis at all.

How funny. I really enjoyed the humor of the situation.

Travis can rest easy. He has not yet made the list.

Wednesday the 28th was surgery day. I had to be at St. Francis at the ungodly hour of 5:30 A.M.

Surgery was scheduled for 7:00.

So I am in a big pre-op room with probably a dozen people all waiting. I was in an area with a curtain drawn around me and all these people kept coming into the area to talk and then later prep me for the surgery.

The anesthesiologists came by and with him he had Doogie Howser 1. He explained that Doogie was going to be assisting him. I was thinking where the hell did they get this kid? I have clothes older than this kid. Yes my fashion is a little outdated.

Then the surgeon who was assisting the surgeon came by. The assistant was one of those white coats that had been in the room when the doctor was talking to Christy. The assistant to the assistant who was assisting the surgeon I had never seen before. He was Doogie Howser 2. I asked what his role would be. He was going to just observe. Good because I was going to object to Doogie 2 touching me at any time.

My chest was being shaved by a lady and some sort of jelly it seemed was being rubbed all over me. The room was ice cold and so was the jelly, and so were the ladies hands. Each time she touched me I could not stop from laughing. She told me that I was the only patient in the place laughing and that I needed to calm down or all the other patients would wonder what was going on. I could not help it.

I looked under the blanket and then I told the lady that she needed to call hospital security because I needed to make a police report. She asked what I was talking about. I told her that I came in here with a six pack and she had turned it into a jelly belly. She laughed and told me that everyone my age that leaves the hospital leaves with a jelly belly. That did not make me feel better.

So the doctor came by to talk, but by this time they had let Christy back to where I was and of course he was talking to her. That was okay because Doogie 1 had given me something before they even wheeled me out of that room and I was almost off to La La Land.

They wheeled me away and a few hours later I woke in recovery. I went home that night.

In a few days I will talk to you about the results.

Kevin

Chaos

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let’s get started.

Kevin

Let’s Talk

It has been a few weeks since my last essay and I have a lot to say.  This might be a long one.  Go ahead and have a seat or lie down on the couch.  Put your feet up and make yourself comfortable.  Here we go.  Let’s talk.

I stopped taking most of my medicines in December and I feel so, so, so, much better.  Not sure that was the best move, but it sure felt like it at the time.  The nausea and extreme headaches have gone. I have not hugged the trash can in my office for weeks.

So when you ask me how I am feeling the answer will be “good.”  Now you have to understand that my good and your good are different.  I will always be dealing with side effects from surgery, radiation, and medications.  I have stopped taking the oral medications, but will continue with hormone therapy for a few more months.

What I am saying is that your good will always be “gooder” than my good.  Is gooder a word?  Well it is now.

 

 

(Everyday is a good day with Cammy)

I look normal.  I look fine.  But I deal with things that you do not see.  I have good days, bad days, and ugly days.  Most often my days are a mixture of all three.  I can be walking along feeling fine and the pain hits.  That pain can literally knock me to the floor.  We are working on trying to solve the pain issue, but for now I have tabled all of their recommendations.  I guess you can say that I am taking their recommendations under advisement.

I mentioned that I was no longer taking any pills.  The goal of the meds I was taking was to shrink any existing tumors and to slow cancer cell growth.  The numbers showed that the poison I was taking was working, but not as well as had been hoped.  The fractional drop in the numbers we were seeing in my opinion did not justify the side effects I was going through.  The cost vs. benefits did not add up.  So I stopped.

Christy pointed out that I was taking the meds to decrease the probability that the cancer will kill me.  She fears that my numbers will soon start to go back up.  She is probably right.  She has the brains in the family.  I am the looker.  You know the eye candy.  Shut up Erin!  I know that I am probably the only one laughing, but laughing makes me feel good.

Christy worries.  I understand that.  I think she would like to see me stick around a while.  We have talked at great length about the future and all the uncertainties of life.  She knows that what is important to me is having more life in my years rather than adding more years to my life.

I want to live not just survive.  Constantly being sick is not living.  Christy has a front row seat to what is happening.  She is a witness to what I am going through.  She understands that quality of life is very important to me and that future decisions will be made with that being the most important goal.

When someone in your family gets cancer everyone gets cancer, especially your spouse.  I try to comfort Christy the best I can.  I often grab her by the shoulders and pull her close to me.  I look into her eyes and wipe away her tears.  I tell her that everything is going to be okay.

So where do we go from here?

Advanced prostate cancer is a progressive, and life shortening disease.  When I say advanced cancer I mean cancer that is not curable.

I like to look at it as a currently incurable disease.  I am hoping that sometime in the future that some smart researcher will find a cure.  I hope that will happen.  I suspect that it will not happen in my lifetime.  I think amazing advances will be made to help people and maybe even help me, but I do not think a cure will be found anytime soon.

I mentioned that I am currently on a hormone therapy treatment.  It is called androgen deprivation therapy.  (ADT)

Androgen deprivation therapy is often used when dealing with advanced prostate cancer.  Androgen hormones are what feed the prostate cancer.  Testosterone is an androgen hormone.  Lupron is used to reduce the amount of testosterone in my body.

You see or hear commercials about men with low T needing to take supplements or drugs to increase their testosterone levels to get them to feeling like a man again.  Well I not only have low T I have no T.  Yup zero.

A side effect of the Lupron that you can see is the weight gain.  The suppression of testosterone causes weight gain.  I was told to expect a 25% increase in body weight.  I went from 155 to 185.  Right now 175.  None of my suits fit.  I had to buy new clothes.  Damn.

I took one suit to my tailor.  I refuse to take all of them.  I hope to lose the weight eventually.  Hopefully when off the Lupron in April the testosterone will recover and the weight loss will be easier.

I have to deal with several nasty side effects due to no T.  One of them being hot flashes.  Ladies I feel your pain or should I say heat.

My office door is near a rear exit.  Sometimes the flashes are bad enough that I will walk outside in the nine-degree weather we have been experiencing to cool off.  It helps.  Next time I will try to remember my key card so I can get back inside.  I had to walk to the front entrance to get back into the building.   It was a long cold walk.  Where is a hot flash when you need one?

With no testosterone in my body the ratio with estrogen is out of balance which causes the hot flashes.  I want to start taking off clothes, but that is not an option at work.  It might be an option when shopping at Walmart.

Men can be such bitches.  When asked about my treatments I have tried to explain the hormone treatments.  I no longer do.  I got tired of the girly man jokes.  The next guy who makes a girly man joke is getting hit with my purse right upside their head.  Take that bitch.

My next Lupron shot is scheduled in April.  I am going to tell them no thanks.  I will then be off all drugs.  Then we will see what happens.  I am so looking forward to being completely off everything.

I will then be tested every few months to monitor the growth of the cancer and when it reaches a certain level I will be back on treatments.  When I return to the treatments I will be sick again.

I asked my urologist how long I would have to continue this cycle of on and off treatments.   He gave me his best “Squints” impression and told me “for-ev-er.”

I will be on this cycle of treatments for the rest of my life or until they stop working.  Some patients stay in this cycle for many years.  I call them superstar patients.  They do not get better, and it might get worse, but does not become terminal.

Advanced prostate cancer patients will never beat the disease, but if treatments are working the disease will not beat them either.  They will battle it to a draw and will die of something else.

This is where I am now and where I hope to stay.  But I have to deal with the reality of my specific disease characteristics, and the treatment options currently available.

Based upon my age and disease characteristics at some point treatments are most likely going to stop working for me, and my cancer will go from being incurable to terminal.

Hopefully this will be many years from now and maybe additional new treatment discoveries might extend my life.  Unfortunately no matter how much I hope I might not become that superstar patient.  The disease might progress faster than expected.

I have asked my doctors how long I have.  The only answer they will give is that it all depends on how I respond to future treatments.  If the past is an indicator of the future I could be fucked.

Most people will not leave this earth without having to deal with some sort of adversity.  This is mine.  It is what it is and we will deal with it.

Some people refer to what I am going through as my new normal.  To me the “new normal” is like the phrase “journey” or being called a “survivor.”  I do not agree with any of them, but if someone else is comforted by these words then they should use them.

To me this is anything but normal so I refuse to say this is my new normal.  I want to work to getting back to the old normal, but I know that is impossible.  This disease has taken so much from me.

I have been mutilated, burned, and poisoned.  More will be coming.  This is not normal.  My life has been forever changed.

People ask what they can do to help.  Others do not know what to say.

There is nothing at this time that you can do to help.  Let me take that back.  The one thing you can do to help is to stay in contact.  Talk with me.  I want so much to talk with you to find out how you are doing and what you have done in the past and what you plan for the future.  I want to hear all about your vacation and talk about your children and grandchildren.  That would make me smile.

We do not need to talk about my cancer.  This is what I have to deal with.  You do not need to deal with it as well.  If you want to ask some questions that is fine.  I will answer.

I do not want you to feel that you have to come up with some magic words too console me.  That is not needed.

I only ask for your presence, and your time.  I am not contagious.

That would help me in my attempt to live a normal or new normal life.

When I think about it I have become a different or new person.  A New Kev so to speak.  Old Kev still exists, but has become hard to find.

New Kev has taken over and Old Kev is not sure he likes that.  Old Kev likes some things about New Kev.  Other things he does not like.

When I find Old Kev I am going to tell him he no longer has to be angry.  Even though he has much to be angry about, the anger does not help. He needs to let the anger go.  I will tell him to smile more and enjoy life.

I would tell Old Kev that he has been strong, but that his constant vigilance has taken a toll on him physically and mentally.  I would tell him that it is time for him to stand down and to let New Kev carry the load.  I would tell him that New Kev has his back.   I would tell Old Kev that I know that he is scared, and that is okay.

I would tell him that Christy wishes he did not use the “F” word so much.

I would assure Old Kev that the fight was not over.

When I find old Kev I am going to grab him by his shoulders and pull him closer to me.  I am going to look into his eyes and tell him that everything is going to be okay.  That is the least I can do for him.

Some people say that everything happens for a reason.  Well fuck, fuck, fuck, that!!!!

Wow!!  I think I just found Old Kev.  Let’s Talk.

Kev

The gift

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

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

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

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

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

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

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

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

I went on the drugs.

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

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

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

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

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

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

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

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

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

IMG_0914

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

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

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

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

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

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

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

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

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

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

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

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

IMG_5617

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

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

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

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

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

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

Love,
Papa

Introduction

Let’s just address the reason for this blog right up front.  I have stage 4 prostate cancer.  They tell me that the cancer has advanced too far and is not curable, and that fucking sucks.

Let me explain my word choice.  You see if you are going to be a reader of this blog you will need to be sure that you have your big boy/girl panties on because I plan on using big boy words.  As for me I wear my big boy Depends.  Prostate surgery and incontinence you know.  That radiation did a hell of a number on me as well.  Fuckers!

Anyway I find that the F word can be used to help explain many things.  I use the word as a noun, verb, and adjective.  So you will probably see it from time to time.

Moving on:  Okay Kevin you have cancer, why the blog?

I am writing for a couple of reasons:  One I find it to be a form of therapy.  I talk to myself a lot and if you are a writer you get to answer.  The second reason is for my three children and grandson and any future grandchildren.

My kids are adults and have moved on with their lives.  My home will always be their home.  The job of a father is never over, but I do not have the influence nor do they need me like they once did.  And that is good.  With the kids we have memories that they will have for the rest of their lives.  If things turn ugly we have had our time together.

With Camden it is a different story.  Camden is my two-year-old grandson.  I love him more than I can ever explain.  My greatest fear in all of this cancer shit is that my time will come before he has had the opportunity to form lasting memories of our relationship.  I can only remember bits and pieces of when I was say five, six, seven, or eight years old.  I would imagine that his future memory of what was going on in his life at that age will be cloudy as well.

So I take videos with him as often as possible, and you will see those here and on Facebook.  I will use this blog to say things to him that maybe he will be able to look over in the future and smile.  I hope, I hope, I hope, that maybe something will happen to change things and Cammy and I will be able to sit down together and read over these pages years from now and laugh.  Unfortunately that is most likely not going to happen.  So these pages will be my branches that I am leaving behind for Cammy.

I read a story many years ago that stuck with me.  In that story a son was taking his mother up a mountain to die.  As he carried her up the mountain she would grab branches from the trees and drop them onto the forest floor.  The son asked her why she was doing that and she explained:  We are going up the mountain together, but you will be coming back down alone.  These branches are to help you find your way.

Maybe something I say here will help my family find their way in a world without me.  I hope that is not anytime soon.  But as I have always said you gotta be prepared for the worst and hope for the best.

You will be learning a lot about me here on these pages.  I will try to be as open as possible and that is really hard because that is not me.  I will be talking about my hopes and fears, and at times that might get uncomfortable for me or you.  If that turns out to be the case and you feel that I am providing TMI, I ask that you stop following the blog.

I hope to also help others with cancer. I will be talking about my treatments, doctors, and insurance companies.  I guess the entire medical establishment.

For those of you who decide to check in from time to time all I can say is strap on your seat-belts, you are in for a hell of a ride!

You will learn that another reason for the blog is just to get myself to laugh.  You might laugh along with me.  I will probable laugh harder, according to my kids.

So that is kind of an intro to what you will find here.  Oh I almost forgot.  I probably need to introduce myself in case someone finds their way to this page through a Google search because they also have cancer.  Welcome.

My name is Kevin Brown and I am 58 years old.  I am the father of three and husband of one.  I am a cancer patient and I will forever be a cancer patient.

Until next time keep on Living…Loving…Laughing.

-Kevin

“Time is shortening. But every day that I challenge this cancer and survive is a victory for me.”
-Ingrid Bergman

The Dance

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

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

IMG_5438IMG_5437IMG_5436IMG_5435

IMG_5434

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kevin
Optimist
Pessimist
Trying to live in reality

MIZ