WHAT HAPPENED TO MY DAD

UPDATE ON MY FATHER

2008-04-23T16:42:00.000-05:00

I decided to write my story about my father into a more informative manner so people could really understand what we are going through and to recognize if they are going through the same.

My father had colon cancer in 2002. Part of the colon was removed and preventative chemo measures were taken with 5 Fu. We were led to believe that my father had been in remission from cancer for approximately 4 ½ years. However, those years were not quite enjoyable. It has been a mind racking misery. My father started falling with an unsteady gait and has slow brain processing skills and stuttering. He could not enjoy life. He is no longer able to fish, drive, fix anything around the house or carry on normal conversations with friends. Now he is unable to perform most acts of daily living and is blind in one eye with his eyes locking on occasion. Other neurological symptoms are worsening. He now has to use a walker because stepping just a couple of feet will cause him to fall.

My father’s oncologist said that he needed to see a neurologist and that it was not from the chemo. My father had been seen by several doctors, a total of three neurologists, all of which were unable to diagnose my father. However, a certain protein kept showing in his blood work. A protein that is produced when body cells are being attacked, almost like an autoimmune disorder (paraneoplastic syndrome). Something that this oncologist should have recognized and did a PET scan. This protein kept lingering and his CEA (cancer) level creepingly elevated over time. This oncologist even refused to send a letter for my father’s disability, stating that she thought he could work.

The last neurologist my father saw contacted the oncologist on numerous occasions. He suggested to her that my father had cancer and he asked her “can you assure me that this man does not have cancer?” Her response was “I can assure you this man does not have cancer.” All of this time my father’s CEA level (cancer antigen) was creepingly elevating. Finally after a long time of the neurologist contacting her to do a PET scan, the oncologist ran blood work and decided to do a PET scan.

I will never forget this day as long as I live. I stay sick about it every day of my life. My mother received a phone call on Friday, 1/18/08 right before noon. It was the oncologist. She told my mother that my father had stomach and liver cancer and that nothing could be done. The oncologist wanted to set up a biopsy to see if it was the same cancer recurring. She did not mention anything about his lungs. Not only was she wrong to give this type of information to my mother over the phone on a Friday at that, but the oncologist did not ask to speak to my father, who is her patient, and give this information to him. She did not set up an appointment or a meeting with the family or anything. She left us with this horrible news all weekend. We were all crying and in complete shock because he had been followed supposedly so closely by her. We just could not tell my father. We all got together and just cried and doubted our faith. None of us could see our father that day because we felt he would know something is wrong. My mother had to play it off in front of him as though she knew nothing all weekend.

That Monday we showed up at the oncologist’s office at the time she was to start her clinic. She said that she could not see us until the end of the day, which I believe was about 4:00 p.m. We had to wait around all day long for her. This made us even feel worse.

After waiting all day we were finally called to the back to meet with this oncologist. We were all seated in the room waiting for her. I had my notebook out so I could write down some things about how this could happen. When she walked in she sat down and looked at us like she did not know why we were there. We had to start off the conversation for her to explain things to us. She just said that he had tumors throughout his abdomen, liver and two spots on his lungs and there was nothing she could do about it.

We were hysterically crying and confused. We asked her how could this happen? She started looking through my father’s chart. She reviewed the CEA levels (cancer). She said well it has been creepingly elevating over time. We asked why didn’t you perform this PET scan earlier on. Her words to this were “I don’t know why I didn’t order the PET scan. I should have. I don’t know why I didn’t.

We brought up the fact that a man with a family history of colon cancer death with his father dying of it and with him having it in the past, how could she not recognize this. She said “I wish now that I would have done it”. This woman showed no emotion whatsoever. She is a very cold person with a horrible bedside manner.

Even though we were angry with her, we asked if she could please help us get my father into M.D. Anderson and she said she would call them. She had her nurse call and they did not get him in. A biopsy was scheduled for the next coming Friday in hopes to get my father in to M.D. Anderson.

The conclusion is that all these years my father was having these symptoms because his body was trying to attack the cancer and could not, so it started attacking other body cells that causes all the neurological type symptoms, like an autoimmune disease. This has been causing all these horrible symptoms. All this pain and suffering and never once did we think it was from cancer. This is horrible for us to endure.

To this day this oncologist is yet to tell my father the news she gave to us. He is still oriented to time, person, place and thing. His memory seems to be okay.

The thing that is so horrible about this is that my father put his faith in this doctor, as I can remember growing up my father never went to doctors. Anyway, he put his faith in this oncologist, he complied with all the tests, follow-up visits, etc., all while she was pushing him off to neurologist, saying it had nothing to do with her with his neurological symptoms.

We obviously switched oncologist. We had the biopsy sent to his office. We let the new oncologist tell him the news that he has stage IV colon cancer. My father seemed a little confused when this was told to him. He did not have much to say, however. I could only imagine what is going through his mind, how could this have happened, just as we are all thinking. This should not have happened.

The new oncologist told him that my father could choose to do nothing and he would have about 1 to 1 ½ years left to live or he could do the chemo and add about 2-3 years on to his life, maybe more. The new oncologist said there was nothing that MD Anderson could do that he could not. It was no mystery, stage IV colon cancer.

My father told him he would think about treatment. The next visit my father told the oncologist he wanted treatment. The treatment this go round is much more aggressive and is really taking a toll on my father, not too mention the neurological conditions just makes everything worse. However, if this would have been tested for by his 1st oncologist in the appropriate amount of time, there is an extremely strong chance that my father would not have these neurological problems today. There is an infusion that is given to a patient with paraneoplastic syndrome that reverses its effects. However, this went undetected by his oncologist for 4 years. This is absolutely ridiculous.

All cancer patients do not get this condition, but it is known about. Any competent oncologist, should have tested him for this with the severe neurological symptoms he was having at the beginning. It is known that with these neurological symptoms starting in a patient with no known cause for it, that it is some form of cancer somewhere in the body with the patient’s own cells trying to fight it and in return they are killing their good cells as well.

Father’s present condition: My father’s neurologist admitted him in the hospital one week ago to do this infusion to hopefully reverse these symptoms or better it for a period of five days to monitor my father. We are waiting for improvement. The only signs I have noticed is that he talks a little better, but not much. He is using a walker now. He looks horrible. I really believe my father is putting his faith in God. I am having a hard time trying to hang onto mine.

In this day and age how could something like this happen. I asked his 1st oncologist, so you just let my father slip through the cracks and now I lose my father because you were not paying attention to his CEA levels elevating all of this time. She had nothing to say.

As each day passes I tend to cry on and off worrying about my father and thinking that he could possibly go into remission with the colon cancer, but the paraneoplastic syndrome is what he will die from.

This has been a heart wrenching road to travel. We cannot and will not let this oncologist get away with her negligence. We are all under an extreme amount of stress, not to mention myself and two of my sisters suffer from a bad anxiety disorder. My mother, I could only imagine what is going through her mind. I am trying very hard to block this out of my mind during the day to hold down my job. It is very difficult to stop thinking about this and how things could be different. We want our daddy back so bad.

Honestly I don’t know how I am going to handle if my father dies. I just cannot imagine it. Even though my sisters and I have our own lives, we stayed very close to our parents. We were always very close to our parents. My father was the type of dad that children could only hope to have as a father.

If anyone has a loved one with these symptoms, immediately get them tested for cancer!

PET SCAN

2008-01-17T17:25:00.000-06:00

Last night my mother called and told me that my father had underwent a PET scan that morning of his entire body. I told her that I had someone online that had just mentioned the PET scan. They are supposed to get the results back today, but I am still waiting for her to call me. She also told me that the oncologist told her my father's CEA levels were elevated. He is undergoing his routine scope again next week. I will just die if he has cancer again along with all his other medical problems.

MULTIPLE TESTS

2008-01-17T17:22:00.000-06:00

My father has had MRIs, CT scans, etc. A neurologist did see that he had some mini strokes, but not to where this would be making him like he is. One thing they thought it could possibly be was when he got the cancer your good cells automatically start trying to kill the bad cells. One doctor seemed to think that even though the cancer is gone, he went through the chemo, etc., his good cells are destroying the good cells, if that makes any sense. My father can speak, but I notice he chooses not to a lot because I think he is afraid that he is going to yell at someone. He is getting to the point that he does not groom himself very well the way he used to. He does not pay attention to his clothes, like what is appropriate to wear... He does not even look like he brushes his hair sometimes when I see him. One doctor mentioned something about his protein level was extremely high. They have done spinal taps also. There is an injection that they wanted to give him, but there is a very high risk of having a major stroke and my father is scared he will be worse off than he is now. I just cannot understand why these physicians cannot pin point what is wrong. It is so frustrating and hard for me, my sisters and my mother.

Another Depressing Christmas

2008-01-01T15:46:00.000-06:00

Christmas Eve will never be the same with my family because of my dad's condition. We were always used to my dad filming, having an occasional drink, talking a lot, walking around, etc. This year he was very quiet, opening his presents almost like a child would.

We do know that he does not have Alzheimer's. It is some type of neurological condition, but again, doctor's do not know what it is or how to treat him.

Please anyone with some knowledge share it with me.

Thanks.

J. Bello

2007-12-07T15:34:00.000-06:00

We had a family gathering at my new house for my dad's birthday. I cooked and we were all having a good time. When my father opened my gift to him I noticed he was just staring at the card. I made a joke and said, "oh you can't see, let me read it to you." Little did I know at that time that he really could not see out of one of his eyes. A couple of weeks later he mentioned to my mother that he kind of could not see out of one of his eyes. Still to this day I do not understand why men feel that they cannot tell you when something is physically wrong. He went to the eye doctor and was diagnosed with Macular degeneration, bleeding behind his eye. He could not see anything out of his eye. Since that time he has been through several surgeries on his eye, injections, etc., and he still cannot see out of that eye. The other eye now has a small cataract.

I will return for more posting.

Chemotherapy, Alzheimers or some kind of Neurologic Disorder

2007-11-27T20:24:00.000-06:00

My father underwent chemotherapy for colon cancer a few years back. It was a horrible experience for the whole family, but we were thankful that the cancer was confined to his colon and they were able to remove it. They only proceeded with the chemo in case there were any lingering cells.

I will never forget the feeling when the doctor came into the room and told my mom, my sisters and me that he had a tumor the size of a grapefruit. We never thought something like this could happen to our father. My dad never complained of anything his whole life and for this to happen was just unheard of to us. The doctor went on to tell us that this had to have been bothering him for a few years and we were even more upset that my dad never said anything. My dad was really never the same since.

A couple of years afterwards my dad starting acting differently. He slowly was losing his patience with us, getting angry, aggitated easily, etc.

I first noticed a major difference in my father when I had recently gotten divorced and my son, who is now six, were moving into our new house. My parents had taken me to the store to get some blinds for my windows. I wanted black colored blinds and my mother was telling me there were no black colored blinds, and at that time my father exploded in the store at both of us.

Later at my house he was trying to put up an entertainment center. First let me state that my father always loved putting things together and had the most patience I have ever seen in anybody. The pieces were all labeled. He sat on the floor for four hours and had accomplished nothing but a very confused look on his face. He tried putting up the blinds (not black) of course and started trying to walk up a little step ladder and continued to show that he was losing his balance. After two hours of him trying to put up one set of blinds, I asked him to stop.

It was hard to see my father this way because we had no explanation of why this was happening.

Will be back tomorrow for more posting.

2007-11-27T20:22:00.000-06:00

This page is dedicated to my father.