So i first want to say that I was wrong about one of my most scathing parts of my last blog entry. When John was going over with me the parts of the PET that my surgeon didn't go over with me (because I won't read it- I know how to read it- but I won't read it- there's way too much to be overwhelmed with) I thought it described my hip tumor as being sub-cutaneous , when in fact he had said CUTANEOUS, which makes an absolute huge difference. The PET showed Rosie, the nice bump on my hip. I have a picture on my NF picture tab. Sub-cutaneous would have been under my skin. So, there is still no real reason why sometimes I double over when I am in pain on my right side. So I guess I am glad I convinced myself of referred pain, since it still basically IS referred pain, and my surgeon is still a dick face.
Anyway, I'm still bothered at the wall my surgeon pushes between us. I was explaining to my primary care doctor today (who I absolutely adore) that I feel like he is just so damn specialized- that his nose is either in people's bodies or in books that when he actually MEETS people his brain says "introduce yourself" ....... "ok now SMILE". I don't know if any of you have seen the previews for that new show coming in the fall on the Fox Channel- New Girl with Zooey Deschannel- there was one scene when her male roommates told htem to smile and she made this smile that made her look like this crazed chipmunk- this really just sort of reminds me of my surgeon except ,w ell, it's not a crazy chipmunk look- it's a sucking sour lemons look. The few other doctors I've complained about do NOT give me that ice cold feeling
I've been so depressed about it though. I don't know still if I really will be helped after this surgery. I just know it's going to be a big pain in the fucking ass. I have felt better on and off throughout the week. On Tuesday, I could barely talk to anybody, by Wednesday I was my usual joking self again, but I'm still a bit off. And that funny surgery video I had planned to show you what is going to be happening with me? Not happening anymore. Why?
1) I don't really know what's going to be happening with this surgery- I knew pretty much EVERYTHING last time
2) I have absolutely no desire to make my surgery funny like i did last time- I am not in a funny mood about it. At all. I can laugh and joke about lots of things but not that. It's too uncertain how I am going to be... way way way too uncertain.
Blah. I'll still make a video, because there are things I want to say, but it won't be the fun video I wanted to make.
I feel bad for my parents. They called me today. I know they are worried. I feel bad they worry about me.
I have been really lucky. I can't even describe how wonderful John is being. Sometimes I notice he's off, which upsets me, but all in all, he's being really strong for me. I LOVE HIM. I've had such great support from friends and I will get to see people over the weekend and Monday. People are being so amazing. My pain psychotherapist has been amazing. My primary care doctor is super amazing. Yeah, I am lucky.
Anyway, today was my last work day. Everybody has been really amazing at work. I am worried about being able to do a good job when I get back- will I be weak? And school!? I'm freaking out about this.
I just hate the uncertainty! Is it just a stupid neurofibroma? If so, will it grow back? Will it be worse when it grows back? Could I be BETTER??? Could it be cancer? Could I really get away with another cancer again? I know I've said before I'd rather it be a tiny treatable cancer than a NFma. ONLY because a Nfma that grows back will always grow back worse and it will be a life sentence of pain/surgeries/regrowth/surgeries/pain.... but...maybe not- Having cancer AGAIN?! I don't want to think about it. I don' tknow- even if it Is a small cancer. Dont' think I want that again. NFma surgery is pretty routine in severe NF1 cases- maybe I just have to come to terms with being one of the severe cases. And come to terms that it could just grow back and I will be worse off. BAHHH.
And how will I be after the surgery? Complications? AAAA! HArd to grapple with sometimes!
In lighter news, as many of you know, I have been keeping up with Jen/Zellie's blog since she died. Her blog was suspended and deactivated because I never got any emails that her bill was late. That was because she used a totally different email address. It took me a few days, but in the last 36 hours, the hosting site to her page has been AMAZING and they really helped me, and thanks to another friend who provided the funds, her blog has been resurrected !!!!!!!
Oh well, I'll have more to post in a few days, and like I said there will be a video or so, but a lot will have to change before I decide to make a new silly surgery video.
Anyway, I'm still bothered at the wall my surgeon pushes between us. I was explaining to my primary care doctor today (who I absolutely adore) that I feel like he is just so damn specialized- that his nose is either in people's bodies or in books that when he actually MEETS people his brain says "introduce yourself" ....... "ok now SMILE". I don't know if any of you have seen the previews for that new show coming in the fall on the Fox Channel- New Girl with Zooey Deschannel- there was one scene when her male roommates told htem to smile and she made this smile that made her look like this crazed chipmunk- this really just sort of reminds me of my surgeon except ,w ell, it's not a crazy chipmunk look- it's a sucking sour lemons look. The few other doctors I've complained about do NOT give me that ice cold feeling
I've been so depressed about it though. I don't know still if I really will be helped after this surgery. I just know it's going to be a big pain in the fucking ass. I have felt better on and off throughout the week. On Tuesday, I could barely talk to anybody, by Wednesday I was my usual joking self again, but I'm still a bit off. And that funny surgery video I had planned to show you what is going to be happening with me? Not happening anymore. Why?
1) I don't really know what's going to be happening with this surgery- I knew pretty much EVERYTHING last time
2) I have absolutely no desire to make my surgery funny like i did last time- I am not in a funny mood about it. At all. I can laugh and joke about lots of things but not that. It's too uncertain how I am going to be... way way way too uncertain.
Blah. I'll still make a video, because there are things I want to say, but it won't be the fun video I wanted to make.
I feel bad for my parents. They called me today. I know they are worried. I feel bad they worry about me.
I have been really lucky. I can't even describe how wonderful John is being. Sometimes I notice he's off, which upsets me, but all in all, he's being really strong for me. I LOVE HIM. I've had such great support from friends and I will get to see people over the weekend and Monday. People are being so amazing. My pain psychotherapist has been amazing. My primary care doctor is super amazing. Yeah, I am lucky.
Anyway, today was my last work day. Everybody has been really amazing at work. I am worried about being able to do a good job when I get back- will I be weak? And school!? I'm freaking out about this.
I just hate the uncertainty! Is it just a stupid neurofibroma? If so, will it grow back? Will it be worse when it grows back? Could I be BETTER??? Could it be cancer? Could I really get away with another cancer again? I know I've said before I'd rather it be a tiny treatable cancer than a NFma. ONLY because a Nfma that grows back will always grow back worse and it will be a life sentence of pain/surgeries/regrowth/surgeries/pain.... but...maybe not- Having cancer AGAIN?! I don't want to think about it. I don' tknow- even if it Is a small cancer. Dont' think I want that again. NFma surgery is pretty routine in severe NF1 cases- maybe I just have to come to terms with being one of the severe cases. And come to terms that it could just grow back and I will be worse off. BAHHH.
And how will I be after the surgery? Complications? AAAA! HArd to grapple with sometimes!
In lighter news, as many of you know, I have been keeping up with Jen/Zellie's blog since she died. Her blog was suspended and deactivated because I never got any emails that her bill was late. That was because she used a totally different email address. It took me a few days, but in the last 36 hours, the hosting site to her page has been AMAZING and they really helped me, and thanks to another friend who provided the funds, her blog has been resurrected !!!!!!!
Oh well, I'll have more to post in a few days, and like I said there will be a video or so, but a lot will have to change before I decide to make a new silly surgery video.
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