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.