The pain that was so horrible I am fairly certain is part of the expander they have in my mouth that is cutting into the soft tissue of my cheek. I am going to ask tomorrow when I go in if anything can be done, as the pain is pretty bad and it is the only thing that is still really hurting.
Here is a before and after- I think it is healing very nicely!!
A journey about dealing with ameloblastoma, and the recovery after.
Tuesday, April 29, 2008
Monday, April 28, 2008
I am scared
I am going back to the hospital today for increased pain on the right side of my face. Please pray this isnt another infection. I have been taking my antibiotics religiously so I dont understand if it is how I got one. I am so scared because I do not want another surgery right now and I think of all that happened last time I had an infection and I dont think I have the energy to go through it all again.
Sunday, April 27, 2008
Going nuts
I am so freaking hungry. I swear if it didnt sound so diva-ish I'd think I was dying of hunger- the last solid meal I had was Tuesday night at dinner. Really. I can only open my mouth like 1/2 an inch or so, can barely get in a spoon, I am sick of sipping on broth out of a mug, I try to eat ice cream but it just fills my mouth with this mucousy stuff from the milk and I am not able to brush my top teeth to get it off so I constantly have phlegm, I cannot chew anything...I feel like I am going crazy!!! If I try to open my mouth a bit wider to put some food in on a spoon that I can swallow directly my mouth starts to bleed and I get worried so I stop. I feel so weak, I mean how can I heal if I cant eat!?
The other thing is the bleeding/leaking from my leg. I cant walk around more than a few minutes before it starts in again so my trips up are limited to peeing which is about twice a day since I am barely taking anything in anyway. I feel so pent up and exhausted of sitting in one place. Worst of all, I have my 2 year old by myself tomorrow because I have no help (Chris' mom HAS to work, she already took this whole week off, and Chris has to work too) and I dont know how I am going to do it when I am still in pain and so unable to move around.
I am really getting frustrated with this whole thing. And it is absolutely killing me that I cannot clean this place. ARGGHHH!!!! Chris is trying his hardest and has been so wonderful but really the floor really needs to be vaccummed, the bathroom really needs a cleaning and I cant do it. I tried doing the dishes when Chris was out at the park with Aron and almost fainted from standing for more than 5 minutes at a time. I think this is the most incapacitated I have ever felt with any of my surgeries and I dont know when it will end.
The other thing is the bleeding/leaking from my leg. I cant walk around more than a few minutes before it starts in again so my trips up are limited to peeing which is about twice a day since I am barely taking anything in anyway. I feel so pent up and exhausted of sitting in one place. Worst of all, I have my 2 year old by myself tomorrow because I have no help (Chris' mom HAS to work, she already took this whole week off, and Chris has to work too) and I dont know how I am going to do it when I am still in pain and so unable to move around.
I am really getting frustrated with this whole thing. And it is absolutely killing me that I cannot clean this place. ARGGHHH!!!! Chris is trying his hardest and has been so wonderful but really the floor really needs to be vaccummed, the bathroom really needs a cleaning and I cant do it. I tried doing the dishes when Chris was out at the park with Aron and almost fainted from standing for more than 5 minutes at a time. I think this is the most incapacitated I have ever felt with any of my surgeries and I dont know when it will end.
Friday, April 25, 2008
Pain
The third day is almost always the worst. It is almost 3 pm and I am just now getting to where I feel I can sit up and not be just overly exhausted and crying and in pain. My face has swollen worse overnight but I think the pain in my leg is even worse than my face right now. I dont know why it hurts so badly but it does. It feels like a deep burn that wont go away. It is uncomfortable because no matter how I lay it bleeds out the side of the stuff they put over it (looks like seran wrap but has a medical name, I think its Tagaderm?).
I had an appointment this morning and my mom ended up taking me. They said it all looks normal, the amount of bleeding is due to the fact that I am borderline anemic and the large area of skin they took off. They peeled the Tagaderm off and also the gauze they had laid under it to soak up the blood after the surgery, it was so painful I started to scream and my mom started to cry I think from seeing me in so much pain it must have been hard for her. It was dried on in some places and when they pulled it just hurt so badly. They say it will heal fairly quickly, and I am looking forward to that as it causes me the most pain so far (even though my mouth is pretty painful).
Here is a pretty picture from after they changed my leg bandage this morning, they put just the Tagaderm over it and no bandaging under it because after the second day the bandaging really starts to stick and it hurts too much to take off, they say it shouldn't stick to the wound itself:
Nasty huh? After all the crying and numbing they did for me I felt I could chance a look at it and its really not as bad as I expected. It does really look like they took a cheese slicer and just took off an exact rectangle of my skin. They say it wont scar and I can see it now too, it looks like where Ashley fell and scraped the top layers of skin off her elbow.
My biggest issue right now is with my lips chapping and my not eating (I have only sipped on some broth since Wednesday). My lips are so chapped they are swollen and huge and almost stuck together, I have been putting chap stick on them non stop but it doesnt help. I think I am probably partially dehydrated as it is too difficult to get things in my mouth, even a glass of water. Hopefully tomorrow will start the upswing of healing, I just dont remember it being this bad. I really thought this would be a fairly easy surgery but it has turned out to be one of the worst by far as far as pain and healing goes. I'm taking my antibiotics and vicodin on a timely basis (12 pm, 6 pm, 12 am and 6 am for the antibiotics and every 4 hours or so for vicodin though I have been able to go a bit longer today without it).
I'll keep you all updated on my progress, please keep the good thoughts coming as I very much need them.
I had an appointment this morning and my mom ended up taking me. They said it all looks normal, the amount of bleeding is due to the fact that I am borderline anemic and the large area of skin they took off. They peeled the Tagaderm off and also the gauze they had laid under it to soak up the blood after the surgery, it was so painful I started to scream and my mom started to cry I think from seeing me in so much pain it must have been hard for her. It was dried on in some places and when they pulled it just hurt so badly. They say it will heal fairly quickly, and I am looking forward to that as it causes me the most pain so far (even though my mouth is pretty painful).
Here is a pretty picture from after they changed my leg bandage this morning, they put just the Tagaderm over it and no bandaging under it because after the second day the bandaging really starts to stick and it hurts too much to take off, they say it shouldn't stick to the wound itself:
Nasty huh? After all the crying and numbing they did for me I felt I could chance a look at it and its really not as bad as I expected. It does really look like they took a cheese slicer and just took off an exact rectangle of my skin. They say it wont scar and I can see it now too, it looks like where Ashley fell and scraped the top layers of skin off her elbow.
My biggest issue right now is with my lips chapping and my not eating (I have only sipped on some broth since Wednesday). My lips are so chapped they are swollen and huge and almost stuck together, I have been putting chap stick on them non stop but it doesnt help. I think I am probably partially dehydrated as it is too difficult to get things in my mouth, even a glass of water. Hopefully tomorrow will start the upswing of healing, I just dont remember it being this bad. I really thought this would be a fairly easy surgery but it has turned out to be one of the worst by far as far as pain and healing goes. I'm taking my antibiotics and vicodin on a timely basis (12 pm, 6 pm, 12 am and 6 am for the antibiotics and every 4 hours or so for vicodin though I have been able to go a bit longer today without it).
I'll keep you all updated on my progress, please keep the good thoughts coming as I very much need them.
Thursday, April 24, 2008
Update
Things got off to a rocky start yesterday when we got there they said that the insurance hadnt approved the surgery yet, turns out they had changed the way that doctors have to submit approvals and didnt bother to tell the doctors so we sat there for an hour and a half before they even took me back. Then it turned out they decided to do the implants at the same time (the studs of the implants, not the teeth yet). So it ended up being a much bigger surgery than we had planned. They deciced not to take the skin from the roof of my mouth so ended up taking a huge amount from my leg, basically the entire top of my right thigh was skinned.
I woke up at 3:30 am bleeding profusely all over the place, and I started to freak out because blood was coming out of my mouth too. I thought I was going to die, they hadnt told me it could get that bad (its rare but happens). So we get to the ER, they gave me a shot of something to calm me down and a shot of morphine because I hadnt been able to take any of my pain pills since they sent us home with pills yesterday instead of liquids. They told me I just have to deal with the bleeding. It is awful and every time I go to the bathroom blood comes pouring down my leg. We are just keeping it wrapped and lots of towels to clean up the mess whenever I have to walk. The skin graft hurts worse than my mouth right now even though that is starting to hurt worse today with all the swelling from the past few hours.
I just want to thank you all for the good thoughts and prayers. I am still in so much pain and scared, the skin graft feels like horrible burning all the time and with my face getting pulled tight from swelling my mouth is starting to hurt, plus all my meds now are liquid and make me almost vomit to take them so I wait until I have to it all just sucks. I go back in tomorrow morning first thing to have my graft looked at, they took an x ray this morning and it all looks good inside my mouth. They had to stick some metal up under my chin on 3 sides to wire the whole thing into place so I wondered why I woke up with 3 holes under my chin, so it is making my swelling look weird underneath. I think it will have a good result though when its all done.
This is me the night before, you can see how pulled in my lip is:
Last night when we got home (that red line is where my skin was pulled inwards under my mouth, it will go away):
My leg yesterday (its starting to swell):
My icky face today (see how swollen underneath is now, its all lopsided because of the metal wires underneath on 3 sides):
And my leg, I can only show you the top part but the entire bandages underneath are soaked through with blood and we just keep putting wraps over wraps, its horrible. I tried to spare you my underwear and crotch shot, lol:
I woke up at 3:30 am bleeding profusely all over the place, and I started to freak out because blood was coming out of my mouth too. I thought I was going to die, they hadnt told me it could get that bad (its rare but happens). So we get to the ER, they gave me a shot of something to calm me down and a shot of morphine because I hadnt been able to take any of my pain pills since they sent us home with pills yesterday instead of liquids. They told me I just have to deal with the bleeding. It is awful and every time I go to the bathroom blood comes pouring down my leg. We are just keeping it wrapped and lots of towels to clean up the mess whenever I have to walk. The skin graft hurts worse than my mouth right now even though that is starting to hurt worse today with all the swelling from the past few hours.
I just want to thank you all for the good thoughts and prayers. I am still in so much pain and scared, the skin graft feels like horrible burning all the time and with my face getting pulled tight from swelling my mouth is starting to hurt, plus all my meds now are liquid and make me almost vomit to take them so I wait until I have to it all just sucks. I go back in tomorrow morning first thing to have my graft looked at, they took an x ray this morning and it all looks good inside my mouth. They had to stick some metal up under my chin on 3 sides to wire the whole thing into place so I wondered why I woke up with 3 holes under my chin, so it is making my swelling look weird underneath. I think it will have a good result though when its all done.
This is me the night before, you can see how pulled in my lip is:
Last night when we got home (that red line is where my skin was pulled inwards under my mouth, it will go away):
My leg yesterday (its starting to swell):
My icky face today (see how swollen underneath is now, its all lopsided because of the metal wires underneath on 3 sides):
And my leg, I can only show you the top part but the entire bandages underneath are soaked through with blood and we just keep putting wraps over wraps, its horrible. I tried to spare you my underwear and crotch shot, lol:
Monday, April 21, 2008
Getting ready
So I have been gathering things getting ready for this surgery. So far I have a new puzzle to do (its pretty intensive, about 1000 pieces), some new movies to watch- I got the first two Harry Potter movies yesterday, I have been buying them out of order- as well as am renting the first couple of DVDs of this series called The Tudors which I have been watching, and have a couple of new books as well. Chris almost bought me the new Stephen King book yesterday but really it is like $30 since it is a hardback and I just felt too guilty spending so much on a book even though secretly I still really want it (I am a huge SK fan). I may check around for it on Ebay later this week if I find I am still bored with all the resting I have to do. I am not sure about the puzzle, I have never done one before on my own but I thought it may be a good idea to kinda break up the monotony.
I am so curious as to how my healing will be with this surgery. It is outpatient so it cant be as bad as the others (I hope) but I am inevitably a sweller anyway so I know there will be lots of swelling. I am still really worried about infection but all I can do is follow instructions to a T and sit back and hope this time will be different. The not being able to eat except for liquids is always hard on me too. There is only so much you can blend up before you want to slam your head into the wall repeatedly until you black out and forget about being hungry. So much for the weight I gained back after this last surgery (I dropped down to about 113/114 and am now back up to 120 but that wont last long).
I am going to enjoy my day today and tomorrow. Last night Chris and I went out, it was our 6 year anniversary. We enjoyed a nice Japanese dinner and then went and had dessert, I had this heavenly triple chocolate cake but then when we got home I was so tired I went to bed right away. I have been tired a lot lately, it is the stress I know. Today I am going to lunch with my mom and then tomorrow lunch with Chris' mom and to finish up some last minute Spring shopping for the kids so it doesnt nag at me. I have to be at the hospital at 8 am on Wednesday so we will leave here at 7:15 to drop Aron off at Chris' moms, plus we have to check in to a new part of the hopsital this time and I need time to find it and not be late.
Of course I will update with pictures and everything. Today or tomorrow I am going to post some before pics. I need to remind myself that it wont look better instantly as the lip has been pulled in for almost 2 years now so it will take some time to release but it will be an improvement anyway.
I had a dream I woke up with a huge 'super chin' and it was quite a nightmare. I suppose if that happens I can always go buy a cape.
I am so curious as to how my healing will be with this surgery. It is outpatient so it cant be as bad as the others (I hope) but I am inevitably a sweller anyway so I know there will be lots of swelling. I am still really worried about infection but all I can do is follow instructions to a T and sit back and hope this time will be different. The not being able to eat except for liquids is always hard on me too. There is only so much you can blend up before you want to slam your head into the wall repeatedly until you black out and forget about being hungry. So much for the weight I gained back after this last surgery (I dropped down to about 113/114 and am now back up to 120 but that wont last long).
I am going to enjoy my day today and tomorrow. Last night Chris and I went out, it was our 6 year anniversary. We enjoyed a nice Japanese dinner and then went and had dessert, I had this heavenly triple chocolate cake but then when we got home I was so tired I went to bed right away. I have been tired a lot lately, it is the stress I know. Today I am going to lunch with my mom and then tomorrow lunch with Chris' mom and to finish up some last minute Spring shopping for the kids so it doesnt nag at me. I have to be at the hospital at 8 am on Wednesday so we will leave here at 7:15 to drop Aron off at Chris' moms, plus we have to check in to a new part of the hopsital this time and I need time to find it and not be late.
Of course I will update with pictures and everything. Today or tomorrow I am going to post some before pics. I need to remind myself that it wont look better instantly as the lip has been pulled in for almost 2 years now so it will take some time to release but it will be an improvement anyway.
I had a dream I woke up with a huge 'super chin' and it was quite a nightmare. I suppose if that happens I can always go buy a cape.
Friday, April 18, 2008
"Hi, I'm 26 with the memory of a 96 year old"
I'm fairly certain that when they removed my ameloblastoma they must have removed part of my memory too because ever since these surgeries started I have not been able to remember a darn thing.
Today I almost missed my pre-op appointment.
It wasnt for lack of knowing that it was today, or the fact that I didnt write it on the calendar. I did. I knew. I even went and got gas last night on the way home from dinner so I would have gas "For going to the hospital tomorow." I said this out loud, to Chris, and even pondered how long I would be there.
But when I woke up this morning all thoughts of having a doctor appointment fell out of my head when I climbed out of bed. I had a lazy morning, got my daughter off to school on time, came home, sat at the computer, milled about with a cup of coffee and thought "ahhhh...is nice not to have anywhere to be." As I was walking across the kitchen at 10:01 am, I glanced at the clock and thought hmm why do I feel so unsettled? I walked into the bathroom to wash my face and as I looked at my face in the mirror it hit me that I was supposed to be at the hospital 20 minutes away about 1/2 an hour ago for my pre-op appointment. Argh!!!!
So I rushed around and left my house in complete dissaray (I wont pretend like I didnt think about it the entire time I was waiting at the hospital) and drove like a bat out of hell to get there, and made it there in a decent span of time I might add. I did the usual wait and talk to the anesthesiologist, answer all the routine questions and was surprised to hear the anesthesiologist didn't feel he needed them to draw any blood this time, which was new but not really a sad thing for me since that would have meant being there another hour and a half or so, as well as getting stuck with a needle.
I found out I have to be at the hospital at 8 am on Wednesday instead of the usual 6 am which will be nice. They did give me this weird stuff called Hibiclens to bathe in the night before and the morning of surgery, it feels morbid to think that I have to 'cleanse' my body with it before surgery like I am prepping my body for the morgue or something. Ugh.
Anyway that is it for now, hopefully I will retain some sanity between now and then.
Today I almost missed my pre-op appointment.
It wasnt for lack of knowing that it was today, or the fact that I didnt write it on the calendar. I did. I knew. I even went and got gas last night on the way home from dinner so I would have gas "For going to the hospital tomorow." I said this out loud, to Chris, and even pondered how long I would be there.
But when I woke up this morning all thoughts of having a doctor appointment fell out of my head when I climbed out of bed. I had a lazy morning, got my daughter off to school on time, came home, sat at the computer, milled about with a cup of coffee and thought "ahhhh...is nice not to have anywhere to be." As I was walking across the kitchen at 10:01 am, I glanced at the clock and thought hmm why do I feel so unsettled? I walked into the bathroom to wash my face and as I looked at my face in the mirror it hit me that I was supposed to be at the hospital 20 minutes away about 1/2 an hour ago for my pre-op appointment. Argh!!!!
So I rushed around and left my house in complete dissaray (I wont pretend like I didnt think about it the entire time I was waiting at the hospital) and drove like a bat out of hell to get there, and made it there in a decent span of time I might add. I did the usual wait and talk to the anesthesiologist, answer all the routine questions and was surprised to hear the anesthesiologist didn't feel he needed them to draw any blood this time, which was new but not really a sad thing for me since that would have meant being there another hour and a half or so, as well as getting stuck with a needle.
I found out I have to be at the hospital at 8 am on Wednesday instead of the usual 6 am which will be nice. They did give me this weird stuff called Hibiclens to bathe in the night before and the morning of surgery, it feels morbid to think that I have to 'cleanse' my body with it before surgery like I am prepping my body for the morgue or something. Ugh.
Anyway that is it for now, hopefully I will retain some sanity between now and then.
Wednesday, April 16, 2008
Surgery is on Wednesday
Wow, that was fast. I dont know that I have enough time to get everything in order before it is here.
Please send good thoughts my way. I always get kinda crazy before a surgery.
Please send good thoughts my way. I always get kinda crazy before a surgery.
Tuesday, April 15, 2008
More good news, and a new surgery
So today's appointment went very very well. The doctors say the tissue and bone graft is ready (yay!), so they did the impressions for the denture that will go in after the surgery. It is not very easy, since that whole area in front is sunken in, and it took a few tries. They have to stick a plate in there that is filled with this gluey-type substance that hardens into the impression, and my mouth has sunken in so far that it is very tight and hard to open up very far. My bottom lip ended up cracking and splitting from trying to get it in- it gets extremely dry these days and with all that stretching it just couldnt take it, so I had to get it to stop bleeding which was a bit nerve wracking. But in the end they think they got a good enough impression to make a good denture.
So I am looking at surgery here in the next few weeks sometime! Already. It always feel like this happens, where I think I have lots of time and then it is here all of a sudden, I suppose that's good in terms of me being anxious and nervous but not so good too because it is coming up so fast and I still have to make arrangments for help with my kids, and some help for myself. This surgery will be them going in and 'releasing' my lip that is pulled so far in because of scarring, they will have to do skin grafts over it all once they go in and open it up again as well but it will be out patient surgery- though none the less painful for it I am sure (although it will be all done inside of the mouth so no more outside scars- that is good).
Unfortunately they do not think I have enough tissue in the roof of my mouth to only take it from there, so I will have to have it taken from two places- the roof of my mouth as well as one of my buttocks (I love that word, shame I dont get to use it too often). That isnt good because of course it means two skin graft spots to heal from but I am really worried about the roof of the mouth because they basically will peel away that whole top layer, leaving all of the bone exposed and it sounds like it is going to be incredibly painful to heal from. I also worry about healing time, as the mouth harbors so many germs and bacteria already. But they say the roof of the mouth is the best way to go, because it is exremely tough and is well vascularized so it is good for the skin graft, or they'd probably just do it all from the buttock (hee hee) to minimize some of the discomfort. All I can do is trust them again and hope that this surgery goes more smoothly than the last. Really I am starting to love all my doctors and think of them as a bit of a family seeing as how its been 3 years now we've known each other.
I'll update when I know more, they are supposed to call me with a surgery date and then there is also all of that fun pre-op stuff that needs to be scheduled as well.
So I am looking at surgery here in the next few weeks sometime! Already. It always feel like this happens, where I think I have lots of time and then it is here all of a sudden, I suppose that's good in terms of me being anxious and nervous but not so good too because it is coming up so fast and I still have to make arrangments for help with my kids, and some help for myself. This surgery will be them going in and 'releasing' my lip that is pulled so far in because of scarring, they will have to do skin grafts over it all once they go in and open it up again as well but it will be out patient surgery- though none the less painful for it I am sure (although it will be all done inside of the mouth so no more outside scars- that is good).
Unfortunately they do not think I have enough tissue in the roof of my mouth to only take it from there, so I will have to have it taken from two places- the roof of my mouth as well as one of my buttocks (I love that word, shame I dont get to use it too often). That isnt good because of course it means two skin graft spots to heal from but I am really worried about the roof of the mouth because they basically will peel away that whole top layer, leaving all of the bone exposed and it sounds like it is going to be incredibly painful to heal from. I also worry about healing time, as the mouth harbors so many germs and bacteria already. But they say the roof of the mouth is the best way to go, because it is exremely tough and is well vascularized so it is good for the skin graft, or they'd probably just do it all from the buttock (hee hee) to minimize some of the discomfort. All I can do is trust them again and hope that this surgery goes more smoothly than the last. Really I am starting to love all my doctors and think of them as a bit of a family seeing as how its been 3 years now we've known each other.
I'll update when I know more, they are supposed to call me with a surgery date and then there is also all of that fun pre-op stuff that needs to be scheduled as well.
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