Well this week I will find out what hospital I want to do the surgery. I meet the doctors at Johns Hopkins on Tuesday. My last opinion. I could keep going but what would be the point. I know... I know I have to get this done. The process is about the same from the two other doctors I had spoken too. Just got to figure out who I like better.
I find myself getting really tired. I don't know if it's stress from the Amelo thing, work, selling my home or all three. Maybe it's life in general. I find that I just want to sleep. Too much going on all that same time. Deep breath.
Sad part is that I had a trip planned to go to Italy next year. It would take place early spring. That is not going to happen due to the surgery. Grant it, I don't know when it will take place. Just that I will and hope to be recovered by then. But who knows.
Too tired to write anymore. Think I will go to sleep.
Sunday, October 28, 2007
Wednesday, October 17, 2007
Off to meet the Executioner
Today I finally got to see the doctor at University of Penn. I think I went into that office with a big chip on my shoulder. Can you blame me? Dr Carrasco (mom said that this mean executioner in Spanish or something) was told what happened the last time I was there but it did not seem to effect him. Ok, strike one.
He looked at the x-rays I had and told me basically what that other doctor did. But he mentioned taking the bone out of my leg, the fibula, rather then the hip. He would not perform the surgery to remove the fibula, another doctor would. He also states that recovery time will be more then a few months. A year to be honest. The other doctor did not state that. He also said that this operation is not a walk in the part. It is a big deal and that he knew the other doctor I met first and advised me that he is a good doctor.
I started to get upset, not that what he was saying was hurtful but the fact that he was treating this as it was. A serious case. I did not get that sense from the other guy. I started to cry. I cry a lot lately.
He also mentioned a Dr called Dr Marx in Florida. Now I heard his name in passing on the Yahoo! Support Group site. But I am not going to Florida for this operation. I thought about seeing someone in the Mayo Clinic down there but it’s too far to travel.
I don't know what I am going to do. This is all too much.
He looked at the x-rays I had and told me basically what that other doctor did. But he mentioned taking the bone out of my leg, the fibula, rather then the hip. He would not perform the surgery to remove the fibula, another doctor would. He also states that recovery time will be more then a few months. A year to be honest. The other doctor did not state that. He also said that this operation is not a walk in the part. It is a big deal and that he knew the other doctor I met first and advised me that he is a good doctor.
I started to get upset, not that what he was saying was hurtful but the fact that he was treating this as it was. A serious case. I did not get that sense from the other guy. I started to cry. I cry a lot lately.
He also mentioned a Dr called Dr Marx in Florida. Now I heard his name in passing on the Yahoo! Support Group site. But I am not going to Florida for this operation. I thought about seeing someone in the Mayo Clinic down there but it’s too far to travel.
I don't know what I am going to do. This is all too much.
Monday, October 15, 2007
Get over your God complex!!!!!
It comes a time when picking a doctor where you can tell if he or she is the right one for you. I was trying to get as much reassurance from the doctor at Thomas Jefferson to make sure he was the right one for me. It's never a good sign when the doctor does not give that to you. I don't know if I hurt his feelings or he was just frustrated with me or thought he was king of the world, but I told him flat out that I really don't know much about his skills or him. I would like references or maybe look at some before or after photos. He stated that he does not like to give them out, references that is. It's almost like take me as I am or leave me. He could not show me before and after for HIPA reasons. I guess I could understands that part. But what killed me was the comments he made. I don’t need anymore surgeries and that I was doing the runaround by not making a decision. WHAT?
He and his associated encouraged me to get 2nd and 3rd opinions and now he accuses me of doing a runaround? Naturally I told him off on that part. He also made a comment about not going over all the options as I have not made my mind yet. Hello, is that not the whole part of one making up their mind but getting all the facts first. And the comment about not needing any more surgeries. Well let me take this one off his table.
Nope, not for me. Bye Bye Thomas Jefferson.
He and his associated encouraged me to get 2nd and 3rd opinions and now he accuses me of doing a runaround? Naturally I told him off on that part. He also made a comment about not going over all the options as I have not made my mind yet. Hello, is that not the whole part of one making up their mind but getting all the facts first. And the comment about not needing any more surgeries. Well let me take this one off his table.
Nope, not for me. Bye Bye Thomas Jefferson.
Sunday, October 14, 2007
I am not happy with that Hospital!
A Second opinion. It was Thursday, October the 11th. Today I had an appointment for my second opinion for the procedure to remove the tumor as well and to check out the doctor at a different hospital. Now I called the office direct on the Monday prior to confirm, as well as confirming that morning. Both times the appointment was verified. I had all my Cat Scan films and x-rays, biopsy reports and copies to give to the doctor. I had a list of questions all ready to ask including wanting to see the doctors CV. I felt well prepared for the appointment. Boy was I in for a surprise.
I found the office with easy. I was a little worried as the Hospital was quite large. I went up to the reception desk giving my name and who I was suppose to see. Long story short the doctor was not there. In fact none of them were. They were in some seminar in Hawaii. I was floored. I called twice to confirm. I was given yes both times!!!! I lost it.
I broke down. I have a TUMOR!!! Where is the doctor? I called twice!! I demand to see the office manager!!! I said all this in the middle of crying my eyes out. I did not need this. Other office patients were looking at me. I did not care. I was wondering who the heck their were seeing if the doctors where not in. I just felt bad as my mom had to watch me go through this all. I hope they don't perform surgery the way they operate the office or I would be in major trouble.
Upon speaking to the manger, still crying my eyes out, I did not feel that much better. She admitted it was their offices mistake. DUH! She gave me money for parking. But that was it.
Of course I will not let this go. I am written a letter to everyone at the hospital regarding this really bad and terrible experience. Not only am I stressed about this tumor, I can now add I am stressed about this hospital. Thanks U Penn.
I found the office with easy. I was a little worried as the Hospital was quite large. I went up to the reception desk giving my name and who I was suppose to see. Long story short the doctor was not there. In fact none of them were. They were in some seminar in Hawaii. I was floored. I called twice to confirm. I was given yes both times!!!! I lost it.
I broke down. I have a TUMOR!!! Where is the doctor? I called twice!! I demand to see the office manager!!! I said all this in the middle of crying my eyes out. I did not need this. Other office patients were looking at me. I did not care. I was wondering who the heck their were seeing if the doctors where not in. I just felt bad as my mom had to watch me go through this all. I hope they don't perform surgery the way they operate the office or I would be in major trouble.
Upon speaking to the manger, still crying my eyes out, I did not feel that much better. She admitted it was their offices mistake. DUH! She gave me money for parking. But that was it.
Of course I will not let this go. I am written a letter to everyone at the hospital regarding this really bad and terrible experience. Not only am I stressed about this tumor, I can now add I am stressed about this hospital. Thanks U Penn.
Tuesday, October 9, 2007
Done in by toast?
Cinnamon raisin toast. Lightly buttered. Sounds good... does it not? It was the morning of Monday, October the 8th, start of a new work week. It had been well over a week since my biopsy. A good week of eating nothing but mashed potatoes, soup and the nutritious Ensure shakes. But after a while a girl needs some solid food. Since I was feeling much better both in spirits and in looks (my swelling went down quite a lot and I stopped looking like Ms Elephant) I could start eating more “normal” food. Little did I known it was the worst thing that I could do.
As I was enjoying my piece of lightly toasted cinnamon raisin toast I felt this big pop in my jaw. The same area where my biopsy was performed. WHAT WAS THAT? Did I just break a tooth? Needless to say I stopped eating right at way. I called the doctors office. My Doctor was not in as he was in sunny Hawaii for some seminar. So a made an appointment to see one of the other doctors there. When I got to the office I was informed that I could have fractured my jaw. FRACTURED MY JAW! The x-ray was inconclusive as the tumor was in the way. I had to wait till 7 pm to get a CAT Scan, my 3rd in 1 month. Should I be glowing? Great more background radiation.
The doctor called me the next day and told me that the CAT Scan was also inconclusive. He gave me more antibiotics and since I did not feel a bite difference I should be ok. SHOULD? I asked the doctor what would happen if I did indeed fractured my jaw. He said that I would need to have the surgery sooner then later as there was a chance for infection, hence the subscription of more antibiotics. Great. All this scare. Guess I was done in by toast.
As I was enjoying my piece of lightly toasted cinnamon raisin toast I felt this big pop in my jaw. The same area where my biopsy was performed. WHAT WAS THAT? Did I just break a tooth? Needless to say I stopped eating right at way. I called the doctors office. My Doctor was not in as he was in sunny Hawaii for some seminar. So a made an appointment to see one of the other doctors there. When I got to the office I was informed that I could have fractured my jaw. FRACTURED MY JAW! The x-ray was inconclusive as the tumor was in the way. I had to wait till 7 pm to get a CAT Scan, my 3rd in 1 month. Should I be glowing? Great more background radiation.
The doctor called me the next day and told me that the CAT Scan was also inconclusive. He gave me more antibiotics and since I did not feel a bite difference I should be ok. SHOULD? I asked the doctor what would happen if I did indeed fractured my jaw. He said that I would need to have the surgery sooner then later as there was a chance for infection, hence the subscription of more antibiotics. Great. All this scare. Guess I was done in by toast.
Saturday, October 6, 2007
Doctor, I have about 80 questions to ask you...
Yeap, you read it right. After looking on the internet of top questions to asked a Doctor before surgery as well as anything I could find on Ameloblastoma, (gosh, that is still hard to say AND type) I came up with a list of 80 questions. The questions ranged from, "What causes this disease? What are your credentials and training experience?" Don't know if the doctor and Thomas Jefferson Hospital was all to happy to answer them but I did not care.
I had my mother there for support. I think she was more nervous then I was. I love my mom to pieces. Anyway, we got to the point where what will happen to remove that tumor (UGH hate that world). Turns out that they have to remove 5-6 teeth and my right jaw. (WHAT!) Also they have to cut a piece of bone out of my hip and place that where my jaw once was. He stated that my hip surgery will hurt more then my mouth. There is no guarantee that the bone graft will hold. There will be scaring, possibly disfigurement and pain. To top it all off, I will have to get my jaw wired shut for 6 weeks. (Anything else you want to throw at me doctor?)
I already knew before I went into the appointment I was going to get a second opinion. I made one with the University of Pennsylvania for next week. I also called the Mayo Clinic in Jacksonville, Florida and the John Hopkins Medical Center in Maryland for 3rd and 4th opinions if need be. I can honestly tell you I am in such a state of denial about the whole thing. I really should not be since this disease has been staring me in the face for the last week ever since that doctor did the biopsy and my face swelled up to a size of Mt Rushmore. But at times I am looking through a mirror a different persons life. This is not me. I don’t have this. I am not going to be scarred or disfigured. I am not going to be in pain. I am not…not… I wonder what the doctor will tell me next week?
After the whole ordeal with the doctor on Thursday I was so tired I went to bed at 8pm. If you knew me that never happens. Eleven or twelve is usually my norm. It's all stress. I am trying to read as much about this on the internet but I am not finding a site that gives me what I need. I did however, find a support group on Yahoo for this disease. I placed a link at the bottom of my blog. I am hoping that they will give me some real insight into this crazy world that I just came part of. Well, at least here is hoping.
L
I had my mother there for support. I think she was more nervous then I was. I love my mom to pieces. Anyway, we got to the point where what will happen to remove that tumor (UGH hate that world). Turns out that they have to remove 5-6 teeth and my right jaw. (WHAT!) Also they have to cut a piece of bone out of my hip and place that where my jaw once was. He stated that my hip surgery will hurt more then my mouth. There is no guarantee that the bone graft will hold. There will be scaring, possibly disfigurement and pain. To top it all off, I will have to get my jaw wired shut for 6 weeks. (Anything else you want to throw at me doctor?)
I already knew before I went into the appointment I was going to get a second opinion. I made one with the University of Pennsylvania for next week. I also called the Mayo Clinic in Jacksonville, Florida and the John Hopkins Medical Center in Maryland for 3rd and 4th opinions if need be. I can honestly tell you I am in such a state of denial about the whole thing. I really should not be since this disease has been staring me in the face for the last week ever since that doctor did the biopsy and my face swelled up to a size of Mt Rushmore. But at times I am looking through a mirror a different persons life. This is not me. I don’t have this. I am not going to be scarred or disfigured. I am not going to be in pain. I am not…not… I wonder what the doctor will tell me next week?
After the whole ordeal with the doctor on Thursday I was so tired I went to bed at 8pm. If you knew me that never happens. Eleven or twelve is usually my norm. It's all stress. I am trying to read as much about this on the internet but I am not finding a site that gives me what I need. I did however, find a support group on Yahoo for this disease. I placed a link at the bottom of my blog. I am hoping that they will give me some real insight into this crazy world that I just came part of. Well, at least here is hoping.
L
Friday, October 5, 2007
"Hi, I have Ameloblastoma. How are you?"
“Hi! How are you?”
It’s a simple question. Most people under normal circumstances would answer, “Fine, thank you very much. And you?” Naturally you would expect a response as, “fine, good, not bad.” A few simple words. Does not really mean much. I would often answer in the positive when I was in quiet an irritable mood. After all it is the polite thing to say.
But no more. I have not said I was fine since Tuesday, October the 2nd. 3:14 PM if I remember the time right. Not since I heard the words benign Ameloblastoma Tumor. Amelo what? Tumor? I have what? Ameloblastoma. I believe he said Ameloblastoma. “Sorry Doctor can you spell this for me? I need to put this all in my blog."
Naturally I rushed home from work. “He said benign. He said benign. That’s good. Not cancer.” I kept saying that to myself all the way home. When I finally got on the internet the first listing that popped up was good old Wikipedia. Figures. They describe it as a rare (lucky me) benign tumor that develops in the mandible. Yes, the doctor told me this much. I did not want to ask him too many questions while I had him on the phone as my head was going to explode just from hearing the words tumor. I had a consultation with him scheduled in a few days.
But how does this happen? Did I not brush my teeth enough? Is this a gum disease that the dentist never mentioned? Upon reading what I could find on the internet I got scared. Deep breath. Just wait till you see that doctor. He will answer all your questions... Or maybe not.
It’s a simple question. Most people under normal circumstances would answer, “Fine, thank you very much. And you?” Naturally you would expect a response as, “fine, good, not bad.” A few simple words. Does not really mean much. I would often answer in the positive when I was in quiet an irritable mood. After all it is the polite thing to say.
But no more. I have not said I was fine since Tuesday, October the 2nd. 3:14 PM if I remember the time right. Not since I heard the words benign Ameloblastoma Tumor. Amelo what? Tumor? I have what? Ameloblastoma. I believe he said Ameloblastoma. “Sorry Doctor can you spell this for me? I need to put this all in my blog."
Naturally I rushed home from work. “He said benign. He said benign. That’s good. Not cancer.” I kept saying that to myself all the way home. When I finally got on the internet the first listing that popped up was good old Wikipedia. Figures. They describe it as a rare (lucky me) benign tumor that develops in the mandible. Yes, the doctor told me this much. I did not want to ask him too many questions while I had him on the phone as my head was going to explode just from hearing the words tumor. I had a consultation with him scheduled in a few days.
But how does this happen? Did I not brush my teeth enough? Is this a gum disease that the dentist never mentioned? Upon reading what I could find on the internet I got scared. Deep breath. Just wait till you see that doctor. He will answer all your questions... Or maybe not.
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