I was stopped at a red light not long ago and a car pulled up next to me. I saw that the passenger side window was coming down and I glanced over and saw my friend Boomer behind the wheel. We had worked together in investigations, but since his retirement a few years ago we have lost contact.
We exchanged greetings and he asked how I was doing. I told him fine. I had no idea what Boomer knew about my situation since we have not talked. The light was going to change soon and he was turning left and I was going straight. Our brief encounter would soon be over. This I suspect caused Boomer to get more to the point with his next question. He told me that he has been following my blog. He then asked, or a better description would be he yelled: “How is your cancer?”
He caught me off guard for a moment. Few people are that direct. I liked it. No sense beating around the bush. Let’s get to the point.
I told him that I was good, and that cancer thing was good. Brutus and I thanked him for asking.
The light changed and I told him that I would post an update soon. That was several weeks ago.
Before I go into more detail let me apologize for not posting sooner. I have been busy this summer. Work, the garden, dance, music, and travel have taken up most of my time.
I also have to admit that I really did not want to talk about it. I have enjoyed my summer and did not want to think or talk about cancer. Now is the time to again have a conversation about what has happened and what the future looks like. As I have said before, writing this blog is in a way therapy for me. It forces me to logically organize my thoughts. It helps me make decisions. When I write it makes me face reality. These summer months I have not wanted to face reality. I wanted to run, jump, and play. Reality sucks! Also things have not gone as I had planned. That seems to be a recurring theme.
Now we are getting closer to my next round of tests which should provide feedback on the choices I have made and will have a big impact on the decisions I must make going forward. These conversations even if the conversation is just with me help. As I write my way through a problem I am better able to make decisions.
Sometimes I do not understand what is happening. Sometimes my medical team does not understand what is happening. I have to remember that they are practicing medicine. It is frustrating when so much is on the line. So much is at stake.
Each person’s cancer is different which is why it is so difficult to treat. Each person faces this monster in a way that is right for them. Who is to say who is right and who is wrong?
I have learned in the cancer world that many problems are not yet understood. No one will ever be able to answer all questions or understand why something is or is not happening. Sometimes doctors do not agree. I have learned to move on and stop banging my head against the cancer wall. The answers will come some day. But for now it is what it is.
The results from my surgery on May 22nd really did not help in explaining what was happening, and tests that were completed after the surgery in June were not good. I went into the June test feeling really good. Most of this summer I have felt better than I have in years, I am happy.
Since I have been feeling so good that also means that Brutus was enjoying his days. You see when I felt bad from the poisons that they gave me Brutus also felt bad. Parts of him were killed and the other cancer cells had gone dormant. He was beaten down pretty good for awhile, but so was I. I would rather never feel that way again. The test results in June showed that Brutus is starting to grow stronger. Damn.
I have gotten a little out of a logical order on what has happened the last few months so let’s go back to my last post and make some sense out of this chaos. I left you hanging last time. Let’s fix that.
Let me go back to when I arrived home from my fishing trip in Colorado and the next day, May 22nd, I was to have surgery. I will start there.
It was the night before my surgery and all through the house not a creature was stirring not even a …..wait a minute that sounds a little familiar. Anyway a mouse might not have been up, but I sure was. I could not sleep and I was up almost all night. I had a lot on my mind. I went to bed around 2:30, but still could not sleep. I got up at 4:30 to go to the hospital. I guess I really did not need the sleep. I was going to be sleeping all day after surgery.
Lying in bed I was thinking about how long I was going to have to stay in the hospital. I was hoping to go home the same day as surgery. The doctor’s staff thought that might be possible, but I was more likely going to be staying at least one night.
I was also thinking about how I got myself into this position? I really did not want the surgery. Dr. O wanted me to have the surgery. Christy thinks that I should listen to Dr. O.
I was trying to figure out how to turn this into a positive. I said to myself: Kevin, I call myself Kevin when talking to myself. I tried Mr. Brown, but that does not sound right. Kevin, you have got to figure a way to use this to your advantage.
I decided that I could play the surgery card when discussing future drugs they wanted me to take. Yup, that is what I decided. I will be the farmer’s pig one more time to avoid having to take drugs. I am going to tell them that I did your surgery thing when I did not want to have surgery. Now you want me on drugs and I do not want them. So now we are going to do what I want. We will see how that goes.
So we get to the hospital and they are prepping me and a male nurse is there to shave my chest. He sees the surgery scar from the last time, and we talk about the last surgery. While talking the anesthesiologist (had to look up how to spell that) shows up. Yes, the same one from my rib surgery in March.
He wants to know why I was there again. I had to explain that my medical team, Curly, Moe, and Larry did not have the answers they needed. They needed evidence so today I was having another rib removed. I could have said something funny to him like hoping I make out like Adam, and wake up with an Eve, but at my age I do not need that drama.
My surgeon then showed up and Dr. S spoke to Dr. A. Typing Dr. A is so much easier than typing anesthes….you know.
They were a little lazy at the last surgery prep. They only shaved my chest on the side where they were cutting me open. I looked a little funny. I asked the man to shave the entire chest area this time. I told him that I did not want to look weird for swim suit season. He laughed then shaved not only my chest, but my stomach area as well. Good job.
While shaving he wanted to know my name. I told him Kevin Brown. He wanted to know my middle name. If I had been thinking I would have said “MF.” I did not say that. Not on the top of my game, probably from lack of sleep. I told him my real middle name. I never tell anyone my middle name. The name comes in handy for one reason only. There are thousands of Kevin Brown’s in this world. I can assure you that none of them have my middle name, and no I am not going to tell you what it is. If you are buying the beer I might tell you.
Anyway I told the nurse. I then told him that if he ever told anyone else that I would have to kill him. I don’t think he thought I was serious. He could make my list.
So I get wheeled into the operating room and Dr. A wants my name. I tell him Kevin Brown. I hear the nurse yell out, “His middle name is ****, and if you tell anyone he is gonna kill you.” I laughed. That is the last thing I remember until waking up in the cardio thoracic intensive care unit. I had never heard of such a thing. I was there I guess because I had thoracic surgery, and something about a partial lung collapsing. Hell I do not know. I have never fully understood why I was in the ICU, but I liked it there.
I have never been in intensive care before. They take really good care of you there. The only problem was people constantly in the room ever few hours all night long. I had to have pills ever few hours. They gave me breathing treatments every four hours. I could not get up and walk around without being hooked up to an oxygen tank and wheeling that around with me. But anytime I needed someone they were there. Hell they were there in my room even when I didn’t need them.
After about a day and a half I was moved to a regular room. I still had to be on oxygen. It was a big difference on a regular floor. Hell I could not get anyone to do anything. I waited over an hour for some water. I got up with my tank and walked way down the hall got the water and made sure I walked past the nurse’s station. They asked if I needed anything. I told them I could have used the water an hour ago when I asked for it.
I have another bitch as well. When I was in intensive care the nurses made sure I got ice cream. It was great. I go to the regular floor and I tried to order ice cream and I was told that had to be approved by my doctor, because it was not heart healthy. Well fuck that!! Hell I have stage IV cancer a little heart attack does not scare me. I would welcome a heart attack as long as it takes me quick. Sure as shit beats dying from cancer. I guess dead is dead. I still plan on being shot by a jealous husband. Anyway after making a complaint to the Geneva Convention I got my ice cream. It was not as good as what I got in intensive care. Damn.
So I get sent home and what I thought would be at the most a week off from work is now going to be longer. Someone was sent to my house to place a big oxygen pump in my basement. A very long tube was connected to the pump. It could reach anywhere in the house. They told me that I had to be hooked up to the oxygen machine at all times. I could not even sleep without it. I had this little gadget that I would put on my finger and it would tell me how my lung was doing.
After I got home I took a shower and I started getting dizzy and feeling weak in the shower. I realized that I had taken that damn oxygen tube off. So I grabbed it off the counter and put it on. Then felt better. They were serious about that oxygen shit. Imagine that.
After about a week my lung had recovered and I no longer needed the oxygen. I had all of these tanks around the house, and I was supposed to take one with me if I left home. Finally I got the company to come get them. They looked like missiles. I thought that I was going to blow the house up.
So let’s move on to the test result from my rib. Once again Christy knows and works with everyone in the pathology department. The guy in charge again looked at the rib as well as another doctor that Christy likes, a different doctor from the last time.
No cancer was found. Which you would think is good news. I took it as good news. But that brings up the question of what the hell was it? The pathologist could see the damage. Last time the surgeon saw the damage, but he had tore up the rib so badly that the pathologist could only check for the presence of cancer cells. They could not see the damage that the surgeon had found. This time the pathologist could see the damage. The doctor told Christy that it looked like cancer could have caused the damage, but no cells.
I will take that, because my thinking was that I now have a better case for going off all drugs. If the rib had tested positive then that was not going to happen.
So the first doctor I see during “Kevin’s Summer Tour of Medical Bullshit” is the surgeon. He says “You know that the test for cancer was negative, correct?” He knows that I have the hook up. I tell him that I did know that.
He is sitting on a stool just a few feet from me and he was looking straight at me. He then looks down to the floor and his shoulders droop. He then looks up at me again and I can see in his eyes and in his face that he feels that he has failed me.
He has believed from day one that the cancer had moved into my ribs. He tells me again that what he saw was cancer damage. I told him that I understood the situation. He again looks away from me. Then there was silence. We both knew that something bad had been going on or was going on inside my body. It was just not yet understood.
When he again looked at me the cancer conversation was over. We knew that there was no reason to continue talking about it. We then talked about how to put the medicine he was giving me onto the incisions to keep germs out. He showed me how to keep it covered so I could go on my upcoming lake vacation. He said lake water better not get into the wound.
Christy works closely with many of the cancer doctors at her hospital. She has worked with my surgeon on several occasions. Therefore that makes me part of the hospital family so to speak. Dr. S believes the cancer has spread and without evidence he feels that I will not be treated correctly. I understand that.
I want Dr. S to know that I greatly appreciate all his efforts. Even though there were times we did not see eye to eye I greatly respect him. Sometimes things are a mystery. At least until they are not. Time will tell.
So the next doctor I see is my oncologist. First thing that Dr. O does is thank me for having the surgery. He tells me that it was needed to help answer questions. I am thinking well what questions did it answer? I did not ask. You see I really have gotten to the point where I do not care anymore. I just want to move on.
Several months ago I was in a bad way. I was in his office and I was not happy with how things were going and I raised my voice a little to let him know my dissatisfaction. He made a statement that I will not forget. He said, “My job is to help you manage your cancer. I have not been doing a very good job.” I thought to myself, no shit Sherlock as I was walking out the door. I did not say it out loud. I wish I had.
The words he used that day have meaning. He did not say that he was there to cure me. He did not say that he was there to help me have a high quality of life. He was there to help me manage. If he was there only to help then that must mean that I am in charge and I was going to make a decision that he was not going to like. No more surgeries and no more drugs.
It was not a popular decision. The biggest reason being the tests that I had a week before seeing Dr. O showed that my cancer was no longer dormant, and that Brutus was alive and well and growing. Being dormant did not last very long. That is very bad. Damn.
We had this discussion in March. He kept giving me reason why I needed to continue the drugs and never come off of them. I just kept telling him no. I will talk more about my reasons on my next post.
During the March meeting we had a very good discussion and I never raised my voice. Honest. He finally understood that I was done for now with the poison being injected into my body and taking pills.
Now I am not suicidal, at least not yet. I know that at some point I will need to be back on the drugs. I know that if I am not on the drugs that the cancer will kill me sooner. I just want for as long as possible to not feel sick. You have to recover from the disease then you have to recover from the treatments.
Christy was not at that appointment in March, but she was at this one. I was concerned that they were both going to gang up on me about the drugs. You see Christy does not like my decision about coming off the drugs.
She had gone to the kids and spoke to them in an attempt to get them on her side. I knew that was going to happen. I had this planned out for months. I spoke to each of my children in person before she got to them and told them what I was planning on doing, and why I was doing it. The kids understand why I am making this choice, and for now they support my decision.
Christy let Dr. O know that she felt that I should stay on the drugs. I thought oh boy here we go. The doctor has an ally and he is going to run with it. I was pleasantly surprised that did not happen. He knows my wishes and he did not throw me under the bus.
He looked at Christy and told her that I did not want them. That ended the conversation about the shots and drugs. I will remain off all medications for now.
He did tell me that he was concerned about my rising PSA numbers and that he did not want that number getting very high. He gave me a number that he felt my PSA should not be allowed to rise above. I thought that number is way too low, and I am going to be at that number in no time. There is no way I am going to agree to that, but I did not say anything. That will be a discussion for another day. I have already started planning for that day.
So from what I can tell Dr. O still does not have the evidence he needs to prove to him that the cancer was or is in my ribs or will return to my ribs. Whatever, it is what it is. I will deal with future problems when and if they occur. He wants me on drugs, but for now he will let me think that I am in charge.
I am scheduled to be tested and maybe scanned in September and October. We will see what happens then.
For now the cancer grows and I understand the risk I am taking. I will have more about the drug issues and the cancer growth in the next post.
The last doctor I saw was the wise old urologist, Dr. U. He had told me during our last visit that he believed the cancer had spread into my ribs. Last time we talked about the need for the second surgery. He told me that they would not find anything. When I saw him in June he did not know that I had agreed to have the second rib surgery.
You see my doctors do share information such as lab work and who knows what else. Unfortunately they do not talk. I wish they did.
When he found out that I had the second surgery he was a little upset. He flat out told me that I did not need the other doctors. He said that he alone could take care of me.
I let him know that I appreciated his concern, but for now I was going to keep things the way they were.
With multiple doctors I am able to learn about more options. I am then able to cherry pick from each doctor. Dr. U has a much higher PSA number in mind when he talks risk tolerance than Dr. O’s. I like that, because I think that it at least lets me know that I am not being totally irresponsible. That a well respected doctor agrees with me on how I want to handle my treatments.
But I cannot ignore Dr. O’s thinking on what needs to be done. He is a very smart man. You may have seen on the news or read in the paper the past few months about a new study involving breast cancer patients in which it was determined that women with the most common form of early stage breast cancer could safely skip chemotherapy. Well Dr. O was one of the researchers and is a co-author of the study. I think I will keep him on my team.
Going forward from here I am concerned that my numbers are going up. That should not be happening. I am concerned that very recently I have again started having discomfort in my ribs. I have tried to tell myself that the discomfort is caused by having been so active this summer. I know that I am lying to myself.
Overall I am happy. I have had a great summer, and I hope you have as well.
Well that is my update on how Brutus is for now.
We will see what tomorrow brings. Remember life is what you make it.
Thanks for listening. Okay, technically reading.