Well the surgery is Thursday and this is Tuesday. I'm getting more and more nervous and cranky and emotional and just all kinds of things. Very sentimental too for some strange reason.
I'm not scared of the surgery, not really. Just a little bit. I've had several surgeries. I counted once. Lets see, I can count again I guess.
I had my tonsils out. I was in sixth grade when I finally did that, so I was a bit old and I was very scared for that. My dad told me scary stories thinking it was funny, but I think he regretted that afterwords.
When I went in for surgery they were doing two of us at one time for some very strange reason. My "partner" was thirty something and I know this cause I was listening to the nurses. Adults really talk too much sometimes.
Well this woman went freaking nuts in the operating room. She was wheeled into the room after me and she suddenly decided she was having nothing to do with it and she was climbing off the table and screaming and throwing her arms around and going totally bonkers.
All these people were around her trying to get her back on the table and the Dr. said,
"Get her under fast before she freaks out this other patient. We'll do her first."
Well, yeah, I was wondering what she knew that I didn't. I was beginning to wonder if I had better get the hell out of there too.
Too late, they had my arm tied down and they were putting me out too. They told me to count to ten and I didn't get to two.
So that was one. lol.
Two was many years later when I had an hysterectomy.
That one didn't go quite as expected and they only took one ovary and I only learned many years later she didn't take any of the ovarian tubes, but she did take the uterus.
My sister came out from Ohio to stay with me in S.F. and I didn't even ask her too. That was really nice to say the least. I got an infection after words that I would not have realized if she hadn't been there. I didn't know at all that I had a fever but she knew right away.
Three was years later when I had tons of pain in my back at first. I thought it was the herniated disks again. (I was really put out by two herniated disks for a couple years to say the least). But then the pain went to the front. It got worse really fast. I'm talking days or even hours. I ended up going to emergency room. They couldn't figure it out.
They only thing they could find was an enlargement of my overy. Well I said I didn't have an ovary there, only on the other side. They told me I was wrong. I told them they were wrong. No I was wrong.
They wouldn't believe me. The patient is always wrong, what do they know.
Besides, "That wouldn't cause this much pain." they told me.
They decided to admit me and "watch me".
Well I had played that game before. To hell with that. The pain was getting worse and worse and I knew I didn't have an ovary there.
If you leave the hospital on your own knowing what is best for you, then they say you left ADA. That means Against Dr.s Adice. This turns out to be a very bad thing on your file. I learned that from some other people. When you're sick a lot you learn a lot of things.
So, I played the game for a day while they "watched me".
I pretended to eat my food because you have to eat to get out of the hospital. I stuffed the food in the milk carton and gave away food to people in the room and the neighbor etc. When the nurse came to check...I had eaten and I liked it all. I said I felt fine and the pain was a little less. Things like that. I did not complain about anything. I got out the next day and I was in so much pain I could hardly walk. They would not let me even have an appointment with an OB so I knew I had to get out of there. My primary Dr at that time wasn't coming in to see me so I knew I had to take care of myself. Unfortunately that really happens sometime and if the patient is too sick to do that and has no one to do it for them....it's damn scary.
The day I got out I went directly to my OB and told the nurse I had come straight from the hospital and the whole story. They were a bit shocked and I got to see my Dr. right away. He had me get a cat scan and he said the "cyst" had already grown considerably since the emergency room (I don't remember how much now) and that I needed surgery right away. He told me that I had a large cyst in the ovarian tube that had been left after my hysterectomy. Two days after getting myself out of the hospital I was having surgery.
Number Four was Leg Nerve Decompression. This was actually Four and Five. I had to have that done on both legs.
I had gone to the podiatrist thinking that something was wrong with the bottom of my foot. I had gone a couple months earlier thinking I had broken a little bone or something. I had an x-ray and it showed nothing. That Dr. was sure something was broken too, because of the pain.
Well this Dr. examined me and right off he said,
" You have to have surgery. You have very serious nerve damage and it could cause drop foot . You have to go see Dr. so and so."
He had barely examined me and right off he says you have to have surgery. This was very very shortly after the cysts ordeal.
I burst out into tears. I was angry and yelling at him. I was shocked and couldn't control my behavior and most of all I couldn't stop it. I was really yelling at him. I was really crying too. I couldn't stop any of it. I was so fed up with Dr.s and hospitals and now he was so casually telling me to do it all again right away.
Between the tears I was yelling,
" You just casually tell me with no care in the world that I have to go and have surgery on both of my feet and then you start to walk out of the room!"
" You just wait. I haven't even said anything. I haven't told you anything. You just want me to walk out of here and just go out and I 'll have surgery on both of my feet! I don't even know you for one thing. This is the first time I've even seen you!" I was shouting and crying and very angry. I didn't like his behavior or mine.
He turned around and stood in front of me and then we had a conversation through my crying and sniffling.
It was horrible on my part and I had no ideal what I was in for.
I did go to the other Dr. who turned out to be quite famous. Dr. Sieminouw. I have to look up her real spelling. She has done the first full face replacement. Another Dr did a partial and when I saw that, it really was only part of a chin and nose. Dr. S. has now, years after my surgery, has now done a full face replacement.
She does this especially for burn victims and such. She was talking to me about it when I was interviewing her for my surgery. She was very impressive. Then I saw her months later on the international news. wow.
Anyway, I had to have three incisions on both legs to do this and she released pressure on a nerve that runs down the leg from the knee to the foot. It did work to an extent but I still have terrible pain in my feet which is neurapathy and they believe after very extensive testing that it is from both diabetes and Lupus.
Six was from what was to be a very simple gallbladder surgery.
A one day surgery, in and out. They poke a couple holes in you, remove it and then wake you up and you go home. Well you guessed it. Not me.
To this day I don't know what happened or what went wrong but something did. Something very bad went wrong and I'm not sure they know totally.
I don't remember ever really waking up. I was in so much pain I couldn't really answer questions they asked me. I remember trying to sleep but that was very painful. I do remember nurses asking me really stupid questions in the night that were annoying me terribly. I was really in a lot of pain. I just couldn't wake up for some reason. I think it was because of the pain, but I'm not sure. I remember the nurses kept saying that I had a high fever and I knew that couldn't be right.
By morning the Dr. was there again and he was really angry they hadn't called him and my sister was there too.I still only heard bits and pieces. As I said earlier, I was too sick to even talk much less make any decisions so I was so glad my sister was doing it all. She took care of every thing.
They were moving me to the main hospital. I ended up there for a week. I was bleeding internally and I could see it when I peed, but they weren't telling me or my sister anything. They just wouldn't tell me anything even when I started asking. I found out much later that I got released the day I finally began to stop bleeding and they were just about to do surgery again to find out what was wrong. They hadn't told me any of this. I was still bleeding but it was finally getting less.
Seven was surgery for the gallbladder again a few months later because I still was having so much pain.
It was just awful. I don't know what went wrong but something sure did. They couldn't find anything "of significance" . It took nearly a year before it really felt better. I told my Dr. I called it my phantom gallbladder. He laughed but then told there really is such a term. He said that sometimes it happens for some reason but that it would eventually go away. Sure enough now after about 2 or 3 years it has pretty much gone away. Only once in a very blue moon I feel a pain but it goes right away.
a big sigh.
I just don't want to do this. I have been sick a lot. You can tell. I have gone through a lot. I wrote all that just so you get an idea of what my life has kind of been like. I left out tons. Months of being in bed over time.
So now I have this thing about the bed. I have already bought a new cover for my bed. It makes it cheery and fresh. It's red and white...mostly white for a change. I bought a new skirt to go with it too. I even ironed it and starched it....you have no idea how big a deal that is. lol. It's very pretty now. It has matching pillow things...those big pillows that go with the covers that you never use for anything but to put on the bed and the floor. Drives me crazy but I do it now.
So my bed is ready for me to do some recovery time in it . ug.
I hope not to be doing much of that. But if I do, I want it nice and fresh and pleasing. When I laid there doing recovery from the gallbladder I thought I would never get out of that bed. As soon as I could I bought a new mattress and paid for that forever, but now I love that. So that's what I do now when I know I might spend time in bed.
So now number eight will be breast cancer. A tumor. A tumor in my left breast. Because I have cancer.
I have cancer. I have cancer. I have to keep telling myself that. I don't feel it. I'm just not feeling it. I know I have a lump. A tumor. I want that out. But cancer? I don't feel it. I don't want it for sure. How does it feel to have cancer? I guess I'm going to know after the surgery and that's what I'm afraid of. I don't want the surgery because then that means I have cancer then. Then I will have to start radiation after healing from the surgery and then I will have to have chemo and then maybe even radiation again from what I've read. I dont' even know any of that. They wont tell me.
"Surgery is the first step and then we will tell you the rest but we already know you have to have radiation and chemo." Why do they do that? It's always if this and if that. We will do surgery and then hand you over to a team of other people and they will decide everything else for you. It's already all out of my hands. Even information wise.
Then I will be a cancer patient. Then I will know all kinds of terminology. I will be speaking the speak. I'll use acronyms and even know what they mean. I already know that bc means breast cancer. I didn't know that. dah. There are tons, tons more. I went to a discussion board and it was so filled with acronyms I couldn't understand half of it. What the hell. I don't want to be one of those people. I just don't.
Damn. I don't want to be a cancer person. I don't want to be a cancer patient. A cancer victim. I don't want to be a cancer survivor. Yuk. I hear that all the time and I don't want to be labeled that way. I don't want all these labels. I don't want to be brave. I don't want to be a survivor. I don't even want to be a patient.
I've been a patient long enough. My whole life in fact. Starting as far back as I can remember. When I was in preschool my friends would help hide me from the school nurse.
Getting off the bus and to the classroom, the school nurse would pick me out of the moving crowd and haul me into the office and tell me I looked too sick to go to class. Because mom's back then didn't have cars like they do now, I would have to stay in the nurse's office all day.
So my friends started helping me hide from her to get from the bus to classroom and then I was ok. I remember that so well and I was only in preschool.
So here I go again. I have to. I can't hide. I just can't hide. Damn it.
I am a cancer person. yuck. I have to think about some way to say that. I can't say survivor cause I can't say that for FIVE freaking years. damn.
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