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.
One of the most frustrating things about dealing with this disease is receiving conflicting guidance from the experts. I’m glad that Dr. U gave you some clarity, despite the answer being as crappy as it was.
Wishing you all the best as you come to terms with this news and move forward.
Thank you my friend.
Thoughts and prayers for you
I am following a woman blogger who has cancer and your site popped up at the bottom and I have been reading some posts. Damn cancer – heart disease, not cancer, runs in my family, but I have seen friends, coworkers, neighbors battle cancer. You seem strong and determined in your struggle. Again, I ask why scientists do not work harder, faster, and try to find a cure instead of worrying about making improved technology or sending man to the moon? Why, why why? Liking a post such as this seems silly … subscribing to your blog is just being human and caring for another human being. Take good care.
Thank you Linda.
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