Update on swelling

Its going down...ever so slowly.

This is my son and I last night:

Ugh I am getting sick again! I just got over a bad cold that started with fever and chills and then worked its way into major congestion, then all of a sudden it was gone. Then my son came down sick and now he has a majorly croupy sounding cough which I hope doesnt get any worse...Ashley has a cough but its not too bad...and Chris came down sick as well but he seems to be getting over it. Then when I woke up this morning I have this horrible cough and my chest feels all heavy...when I talk too much I lose my voice. *Sigh. I never get sick (none of us do, actually- we're a pretty healthy family normally), so all of this sickness is starting to drive me crazy. I have so much to get done before the weekend is over. My daughter's birthday party is Saturday and I have a lot of holiday things to do as well as personal things, like dentist appointments for both kids and things like that, as well as get my Christmas cards out so they get to people before the first of the year.

I feel so anxious about being sick again, mostly because I just stopped my antibiotic yesterday and I cant help but feel worried about the fact that I am sick again after only a few days of reprieve. I just hope its not the sign of bad things to come.

Update

Sorry I havent posted lately, I've just been so busy- its that time of year! Anyway, I had a doctor appointment this morning. All looks well. I stopped my Augmentin yesterday (oral antibiotic) so I guess we will wait and see what happens. I know my doctor had mentioned he is nervous since I was only off the Zosyn for 4 days when I got that new infection last time so I guess we will see. I am nervous every minute of every day but am trying to just go on. I have dreams that I wake up and there is stuff coming out of my neck all the time too and it makes me restless at night.

My swelling looks a bit the same, the underside where the original infection was looks the same, but that could take a long time to go down because of all the infections. My biggest challenge these days is my appetite. I dont feel hungry, I could go ages without eating. Today it was 1:30 pm when I looked down and realized my hands were shaking because I had had a cup of coffee this morning and no food all day. Then, when I started to eat I was ravenous. I dont know why I am going so long without wanting to eat. Its frusrating, as I know I need to be eating at regular intervals but half the time I am just not hungry at all, and the other half of the time my body isnt telling me its hungry when it is, in fact, starving.

Another new issue is I have gotten so used to being sick that I just cannot think of myself as healthy anymore. Every little thing is cause for alarm. Its enough to drive anyone crazy. Today the doctor said he didnt need to see me next week, but could see me the week after- I asked for an appointment anyway. Its not that I want to go- I hate going every week- its just that I feel like if I make an appointment for 2 weeks away I will jinx myself and something bad will happen to me and I'll end up going anyway. Such is my life, I guess.

So other than that I am trying to take it day by day, and am still choking down those nasty vitamins every night. At this point I will just take not having any new infections, and that is what I am trying to focus on- staying healthy. Anything else good would just be a bonus.

Oh and here is a quick picture of me today (dont mind the shiny forehead- I dont wear makeup):

Not bad news...

So it appears the pus that was in my neck last time and this past time was not bacterial, that is, not another infection- thank God. I discovered for the first time today that pus doesn't neccessarily mean infection- I always thought it did (and it would have saved me a TON of worries and stress if I would have known that before as well, grrr). They said its just mixed in with 'normal' secretions from the neck, I guess I have an overabundance of fluids and it just created a little sac to build up in. So now we are back to just regular wound care, poor Chris gets the brunt of it. Clean the area with the bacitracin (sp?), then flush the wound with saline and pat dry, then pack it with the silver nitrate and bandage it all up again until it heals. Its tedious and annoying but I'd rather have that than another unknown infection any day.

So that was the bit of good news I got at this morning's appointment. I am still extremely wary. Its sad when good news just isnt 'good' to me anymore, because it seems it is ever changing, and tomorrow (or even tonight) could bring about a whole new host of problems which could put me in the hospital. I find its worse on me to get up and up and then the fall seems so much greater when something new bad happens, so I am trying not to feel anything. I am very drained emotionally these days. Yesterday I had crying jags off and on, similar to right after I had my son. It is very tiring to feel so much at once and I find that I dont have much energy at all, yet I sitll have to force myself to rest as my mind continues to go at about 110 mph. I just wish my body could keep up.

They did not do the testing today. They have to make all kinds of arrangments for it as well as try to get my insurance to cover it, and I am not even sure if it will be done at the same hospital (or even if they will even do it if I start to heal finally, who knows). I'll keep you updated on that situation as well.

One day at a time.

More issues

Well, what I thought was a keloid was actually a new pouch of infection. I had it lanced a week ago and it was filled with pus, and for some reason it came back again. They took a CT scan and the doctor said today that there is a tiny ray of light that shines all the way up from my neck to where the graft site is. Whether this is a slow leak of some sort or what we are unsure. So today they ended up cutting the sac open with a razor and letting it drain, aspirating it and then packing it so it will stay open.

It sucks having another open wound to deal with. What sucks even worse is the fact that my doctor wants me to be tested for some weird genetic anomaly which basically would be my immune system not producing enough collagen to heal itself properly. Its some auto-immune disorder but basically could possibly be the reason why I have been having so many issues with my healing (repeated infections, hip fractures, etc) this far out from the original surgery date. I am young and *should* have youth on my side, as well as the fact that I am a non-smoker, and take pretty good care of myself- I am a surgeons dream patient as far as that goes. I pray its not that because if it is then we will be at a standstill as far as my treatment goes and most likely it would be to just try to clear things up and then just stop surgeries altogether. It would also be that all the surgeries I have been going through were for no reason at all, and that is such a huge dissapointment for me that I cant fathom it.

I felt I had gotten to a good place where if this was it and the doctors couldnt do any more for me that I could finally be ok with myself the way I am but I realize that its so much deeper than that. We always hold out hope for the best as humans, even if we say we dont have any. To not have any hope would make you feel crazy when you are in the midst of it all- shreds of hope are what have held my sanity together throughout this whole process. I have always thought that God wouldnt let me suffer like this to just reach a dead end, I felt after he had humbled me enough or whatever his purpose was that he would reward me with the desired cosmetic result. I know I have to hold out until its really over but there is some nagging feeling in the back of my mind that says it already is. Whether its just my slowly built up pessimism towards a positive result or the reality and truth of it all I dont know.

There are times I wonder if this will ever be behind me. I have been so discouraged, especially lately. Just not hungry, depressed, tired...just mostly tired. I'm tired.

Eww

It seems I have developed a keloid where my incision on my neck closed up. I am not sure how I feel about this. One is it's one more disgusting thing about my appearance that I have to accept, and two, I have hopes it will shrink and maybe even go away but there's nothing I can do to make it go away by crying about it *sigh. It just feels like theres always something new to worry about and deal with, but such is the nature of dealing with an ameloblastoma. Will it ever end?

Here's a picture of it, I feel like I should name it since its so big.

"You should shave your head"

Recently I was having a conversation with a friend of mine and she said to me, as so many have said before, "Man, Tina, I just don't know how you have gone through all of this. I think I'd just go crazy if it was me, I just can't imagine."

Its funny, but the first words that popped out of my mouth were "You know what? You should shave your head."

Of course this was met with a big 'what do you mean?!' on her part, and rightly so, it did seem like an odd thing to say at the time. But the more I think of it, the more I like this idea. I think that anyone who really wants to know what its like to go through something that completely alters your appearance should shave their heads- especially women. I dont mean just shave it shave it- I mean like BIC it- use a razor and get a nice, shiny, bald Mr. Clean head. Then go walk around without a hat for a while and see what it's like. This is what I have felt like for the past 2 years. People will stare. Some will point and whisper. Little children will candidly exclaim "Mommy, look at her head!" as children are so very outspoken and honest. The first few days you will be quite embarrassed. You will send your husband to the store for the few small things you need. You wont want to go put gas in the car because you are tired of the stares. You will begin to think its nicer to stay at home and read a book than it is to go walk around the mall for a while like you usually do on Saturday afternoons.

Then, after some time, after you have, of course, re-shaved your head numerous times b/c hair grows back (much faster than jaw bone does I have to say- *wink) you'll start to feel melancholy. You'll start to hate staring at the walls at home, and miss feeling the sun on your face and the wind ruffling your hair. You will start to feel down, so one day, maybe a few weeks later for you (took me about 10 months or more) you decide to go to the store when you are out of bread instead of sending your husband. You are so glad to be back outside among the living that even though people are staring at you all over again, its ok. Its still nerve wracking, and maybe the more blatant ones who dont bother to hide their candid rudeness will upset you a bit. But you are so glad to be back outside that you realize- who cares? My head is bald, but I am still a human being, I still need to go out and do things and be alive. After all, staying indoors and hiding away from the world is not truly living.

This may seem completely out there and over the top, but in reality I think that everyone needs to go through a life-altering change to their appearance like this in order to understand people like myself who have these things happen to them and who's bodies have been changed forever- breast cancers, tumors, amputations, etc. I think the common thought is "I'd just DIE if anything happened to my face!|" I know I myself had thought that up until the time I was diagnosed with the ameloblastoma and even after it was removed. But you know, you realize after a while that it really isnt what is on the outside that counts. We begin to rely on our looks in society so much, especially as women, that we forget to take care of what is on the inside. So when something happens to the outside we become frantic and depressed, we feel like we are less than women who have perfectly attractive, 'normal' faces.

These days I like to think of myself as an analogy for the pottery maker who is making his latest masterpiece. I am a new pot. The embarrassment, the tears and the anger I have felt since the beginning are transforming me into a new beautiful piece of pottery. I was beautiful before, when the Artist first formed me. But I was made out of soft clay. If I was poked with an object, my sides would cave in and I felt pain. I couldnt even hold water because I was too weak. I needed to be put into the fire in order to achieve my true beauty as an individual. The 'new' piece of pottery that I am going to become is so much more beautiful because it has been through the fire and become stonger, it has a shiny glazed outside and a hard inside, it is more useful because it can now hold things like it was meant to.

Still, every day is sometimes a struggle for me and I often feel tired of dealing with all of this but I know it will pass. I like to think of a quote by Anne Frank: "I don't think of all the misery but of the beauty that still remains."

Liberating!

So, tomorrow I get my PICC line out. I only have two doses of the Zosyn left to go, my 2 pm and my 10 pm. Yay!!! I am going to feel so liberated having this out of my arm. I told Chris I am going to shower until I am all pruney and white and wrinkled. Unfortunately, the doctors do not think I am ready to go off antibiotics all together so I get to take these absolute horsepills of penicillin twice a day for another 2 months. But, its will be worth it to be off the IV meds!

My neck wound is ok, the wound is getting smaller and smaller. But it does still drip here and there (do try to control yourselves, I know that is awesome) which sets my anxiety rolling every time it happens. I am really ready for it to close entirely and it seems to be taking forever! My swelling looks down a bit every day so that is good.

I hate to admit this but for some reason I worry that I am not out of the woods yet. Every time something happens I worry that its another infection. For example, over the past week or so I have been getting flushed and my face stays pink and warm for quite a while. I am wondering if it isnt the Zosyn, as the doctor said I had a delayed reaction to it with the itching while it is going in, so maybe it is because it is in my system all day long that every once in a while it makes me flush like that. There is that, and then also the incredible fatigue I have been getting over the past 3 days. It usually hits me around 6 at night, so I am not sure if that can be attributed to the fact that I just wear myself out all day and then just have to lay down or if it means something more. I just cant stop worrying that the infection is going to come back- it consumes me sometimes, and its all I can think about. But I have to take this one day at a time and just hope that I am okay from here on out.

I realized I havent shown my hip scars lately and how they've healed. They are looking good. The scars are still red, but they will fade over time, and all of the bruising is gone. I am really happy with how they look, the incisions follow the line of my hip bone and are very even. When they totally heal I think they will hardly be noticeable. I am going to show pictures from the first day, and the last picture is from today. You can also see how much weight I have lost, hopefully that won't continue or soon I'll look like walking stick person with a big balloon sized head.

It's been a while- updates

Sorry it's been so long but things have been so crazy, between giving myself my meds 3 times a day, lack of sleep, wound care, trips to the hospital, and taking care of kids the past weeks have been a bit of a blur. So I thought I'd give an update for those following along with my story.

Yesterday was a good appt. They ended up taking another panoramic x-ray b/c the dr wanted to make sure that all was well with the graft before he signed off to have my PICC line removed Sat. He was very happy and he said there is still so much bone in there and the graft looks good. So now we are playing the waiting game until probably about April. If all looks good by then (and I can manage to stay infection-free) then we will proceed to the next surgery. I still have at least 4 to go, maybe more but those will all be simpler than this one. One surgery to put an implant to hold the shape of my chin (when the swelling goes down it will cave in again b/c theres no more fat/cartilege in there since they took it w/ the tumor) and they will also have to 'release' my lip. Basically it is pulled in and they have to go in and release it by cutting up the scar tissue that is pulling it inwards. Then 2-3 more surgeries to do the teeth implants if all goes as planned. I dont even care about those surgeries b/c from what I understand they are a drop in the bucket compared to what I have been through with all these bone grafts.

So Friday at 10 pm is my last dose of the IV antibiotics which means they will send someone out on Sat if they can, if not then Mon to have my Groshong removed. Then I can shower again, I am so looking forward to it. The incision in my neck is almost closed, they are having me leave it uncovered now which is kinda yucky (some stuff still comes out of it every once in a while, ew) but I am dealing. They said it will help it to close all the way if its not all bandaged up 24/7. They did one last cauterization yesterday, and I didnt wear a bandage all day. Nothing came out of the wound, and I was so happy and liberated. Then last night I was on the computer and heard something *drip* onto the chair...well, there was some fluid coming out which is totally normal- it is still an open wound but it freaked me out and I started crying. I realized it just brings up memories of the day the infection came to light, where I laid down for a nap and stuff just started running out of my neck. Then I ended up in the hospital and it was all such a nightmare for me, I think I am still traumatized from that experience. I've never felt so out of control of my life as I did that week. So I bandaged myself up for the night and now I am not wearing one today, so hopefully it closes up quickly. I hate having to worry about fluid shooting out of my neck in public (isnt that a great picture?!), its certainly not conducive to making friends :).

That's about it for now. After the PICC line is removed I will still make trips to the hospital twice a week until my wound is closed, then we go to waiting and waiting until we know for sure that the graft has solidifed. I am taking multivitamins and supplements to help my body out with nutrition so it doesnt absorb the graft due to deficiencies in my diet which is still a fluid/soft diet by the way, ugh.

I also sat down and compiled a few pictures which I believe are in order (they were not organized well) that I have taken from the beginning to show the progression of the swelling going down. It still has some ways to go, especially underneath where the infection was, but that will go down too eventually with more time.

No more drama in my life

Ha, yeah right. I am either the unluckiest person when it comes to all this stuff or there is something really wrong with me...yesterday when I was carrying my 2 year old son I started to jog with him across our parking lot (it was raining) and I heard a loud *crack* sound from my
right hip. My hip kinda swung forward and it threw me off balance so I just sat down on the ground, it hurt so bad at first that it took my breath away.

I had to go to the ER and met my dr there. They took X-rays and found that I had fractured along the top of my hip bone. No surgery required but I have to be on bed rest, no weight on that leg and use crutches for six weeks. Ugh. My hips felt fine! They said they had to take so
much bone from both sides for my graft that they are still weak whether they are bothering me or not. I often forget they've been operated on at all. I was just starting to feel normal after my
infection that landed me in the hospital and now this! Ridiculous.

And if I hear one more time "well THAT wasn't supposed to happen" or "that doesnt usually happen," I am going to scream.

So, I woke up today in a fair amount of pain. It was so hard to sleep last night, I could only sleep on my left side because obviously the right side is out, and then when I tried my back the pressure of my body weight bearing on my right hip was too much. Its also so hard to use my crutches that I have just been hobbling everywhere but then every once in a while I will bear down harder than I thought and the pain just shoots everywhere. Its difficult not to be on your feet when you have a little one at home. Ashley is spending the weekend at my mom and dad's again, she only got to be home for 3 days before something else happened. I am going to try to get proficient on these crutches this weekend so she can come home again. I need to be able to get up and down our apartment staircase on crutches so I can get her to school, that's the biggest dilemma. I can get up ok but down is so scary, its a pretty steep flight of concrete stairs and with my track record these days I'd most likely end up at the bottom of it with a crutch sticking out of my eye or something. I have also been feeling so tired all the time, which is not like me, all day yesterday all I wanted to do was sleep. I am guessing its just my body's way of saying it's had enough. It was hard to get up this morning too.

Yesterday Chris said he was telling his boss about everything that has been going on lately and his boss said if he hadnt been hearing it from Chris and know him that he'd think that he was full of crap. Boy I think I have never wished I was full of crap so much in my life and that I will just wake up and this will be the world's craziest dream or something. I guess I just keep saying well maybe our luck is about to turn for the better after all of this. I am, however, seriously considering just putting a bubble around myself like Bubble Boy and living like that. I am sure somehow I'd manage to damage myself anyway.

My son keeps using my cruches as weapons, he will pick one up and carry it around going "Bam! Bam!" I think he's trying to take me out. Here's a picture of him 'guarding' my crutches, every time I need to use them he cries and I have to wrestle them away from him:


That's it for now, I wore myself out! Oh and the swelling looks about the same, maybe just a *tiny* bit smaller. So nothing new to report there.

So begins the waiting game

Not too much new to report, it seems I am entering the waiting territory where we wait and wait until we find out if the graft was successful or not, barring any other complications I may have of course. I now only have to go to the hospital every other day (yay) to have my wound checked. We no longer have to pack it because it is too shallow, so we just have to wait for it to heal itself up the rest of the way naturally. That is nice because now we just have to keep it clean which is easier. I switched to a smaller bandage and dont have to wrap that gauze around my neck anymore- as long as I dont have an allergic reaction to this tape. I had a bad reaction to the tape while I was in the hospital, my neck was all red and irritated and bleeding. So we switched to paper tape which is gentler on my skin. I hope it works because the other is so bulky and uncomfortable.

The swelling looks the same so nothing fun to report there either. At this point I guess it is going to take a while but I cant help but feel impatient for it to go down already. Here I am today:

Well, another good day at the doctor with some confusing news as well. The doctors are very pleased with how my neck wound is healing up and it seems the infection is either 100% gone or going. But today they said I am not considered out of the woods yet because there is no way of knowing...is the infection gone because of the aggressive meds I am taking (the Zosyn) or is it gone because it just is. Does that even make sense? In essence, is the only thing keeping my body from rejecting the graft the Zosyn? So I guess we wont know until 5 weeks from now when I stop the medication if it is going to come back or not. That is disheartening because I had thought that once I finished the Zosyn all would be well and to think that it could possibly come back and my body reject more and more of it is so scary to me. Will I have to be on medication for the whole 6-9 months it would take for the graft to solidify? Is that even a possibility (dont you build up immunity to certain meds over time)? Ugh I dont even want to think about that. So send good healthy thoughts my way that this turn around is because my body is starting to 'like' my graft and not 100% because of the medication alone.

So I still have to go every day this week to have my wound checked and packed by the doctor. The incision is getting so small, Chris said last night it's like trying to stick gauze into a paper cut. I now have a medicated syringe we have to squirt into the wound for the next week or so but hopefully it will be closed up soon so I can shower again! Its too hard to shower with not being able to get two parts of my body wet, if I only have to worry about my arm getting wet it would be so much easier.

My swelling looks the same today. I know its a long road but I guess I am getting impatient. I have lost 11 pounds, and none of my pants fit right anymore. Because of my strict diet it will be almost impossible to gain that weight back again but my goal is to not lose too much more. I am onyl at 119 right now (I was up to 130 before my surgery) so any more could be bad for me health wise. I am also taking a multi vitamin to get my iron and calcium levels up.

That's all for now!

Yay for good news

Well today we got some more good news. The cultures came back from the lab, and the stuff that is still draining from my neck (ew I know) is no longer pus but normal tissue secretions. I feel so relieved because I haven't noticed much of a change as far as drainage goes, I mean its been much less than it was when I was in the hospital but still its coming out. I was worried that I'd have to have my neck cut again because of how rapidly the hole is sealing itself up and the fact it was still draining. So that was relieving to hear, it seems the Zosyn is doing it's job.

My swelling is going down, and I am starting to feel good again. I even went to Target yesterday. Its funny, before this all happened, even after my surgery on Sept. 11th I was scared of people seeing me. I guess maybe after all I went through with my hospital stay and all that it changed my outlook- now I dont care one bit about people staring at me. They can alllll kiss my butt because at least I am not sitting in the hospital! I hope this attitude stays, because that was always so discouraging to find I still cared how people thought of how I look, people I'd probably never see again and who were rude enough to stare. And this time it's much worse, with my neck all bandaged up and my jaw still swollen and this bandage covering my Groshong on my left arm, I kinda look like someone beat me up.

I gave my doctors a bit of a laugh today. Every morning before I leave the house I change my neck bandages just because I like to go out with clean ones on. They have been asking me to bring in 'the specimen' (the bandage with the discharge on it) and I always forget it. Well, today I remembered, so I stuck it in a baggie and found an old Christmas ribbon and put it on top. Then when I got there I told my doctor I had a present for him. They all thought that was funny referring to my nasty disharge-y neck wound bandages as 'a present.' Hey, I still have to have a sense of humor about this. ;P

On a side note, I have been feeling so exhausted with this medication routine. I am super tired because I cant sleep for long stretches of time. I have to set my alarm for 1 1/2 hours before a dose to take the medicine ball out of the refrigerator to get to room temperature. It was originally only one hour before but my vein was getting too irritated with the coldness so now it has to be out longer. So I set my alarm for 4:30 am just to get up and take the med ball out of the fridge, then re-set my alarm for 6 am to take it which requires getting up, washing my hands, using an alcohol prep pad, inserting the saline syringe (which takes forever because you have to do it soooo slow), then attaching the med to my IV line. So then after about 15 minutes I go back to bed, re-set my alarm for 7:30 am since it takes an hour and a half to all go in, and then at 7:30 I have to get back up, wash my hands again, un-attach the med ball from the PICC line, swab it all with alcohol and do another saline syringe flush.

I have to repeat this routine 3 times a day and darn if it doesnt always happen when I want be sleeping! If I try to nap in the afternoon its always around a med time (2 pm) so I cant, then at night my dose is at 10 pm so it doesnt even finish until 11:30 so there's no such thing as going to bed early. Blah. When I think about having to do this for 5 more weeks I swear I want to go crazy. Not to mention I cant remember what it was like to shower like a normal person. I have to wash my hair in the kitchen sink because I cant get my neck wound wet, then I go in the bathroom and sponge off my upper half of my body (cant get my Groshong arm wet at all) and then I run the bath water and kind of crouch in the tub and clean myself that way. I cannot, absolutely cannot take baths. They just disgust me, its like sitting in my own filth and stewing just is NOT getting clean. Cant do it. So that is how I bathe myself every day. I miss showering, because I used to do it at the end of a long day to relax, and I wont see that shower for another 5 weeks. Boo.

Anyway, my left arm is feeling much better, the hot compresses and trying to relax it more have really helped, and the lump that was forming on the side of the vein has gone down. I have also had some weird dreams, I am sure if they are stress related, but last night I dreamed my head surgeon was accusing me of not coming in sooner, and that this infection was all my fault. I think in my heart I still worry about that, and it bothers me.

Here is a more recent picture, the swelling is really going down isnt it?

Groshong is short for STUPID

I am waiting for a nurse to come to my house. My arm that has this Groshong in it is extremely sore and I cant use it much. From what I have read this is not a normal occurence so of course I am worried it is already infected or something stupid along those lines. Its not red or swollen and I dont have a fever which are the signs of an infection but then again my face wasnt red and I wasnt running a fever when I got this whole dumb infection in the first place so what does that mean anyway- obviously my body doesnt work like 'normal' bodies do. The nurse said it sounds like it could be what they call mechanical phlebitis (sp?) which is just like an irritation of that vein and it can be resolved by hot compresses and things like that so I pray thats all it is b/c I swear if they have to take this out and do another one or admit me to the hospital again I will go crazy. Ugh!

Still a chance

Today at the doctor something great happened. My main surgeon decided to take an x ray to see what all was going on with the bone graft. Well...after being left in the room forever and freaking out they came in and said it appears that you have only lost about 20% of the graft. This means that I still have an 80% chance of the graft taking if we can kick this infection soon. I am just amazed, I've been crying and going through all kinds of emotions. Going from there's pretty much no hope in my heart to this is just such an emotional whirlwind for me and I dont want to get my hopes up but still....

So, last night was Chris' first experience packing my neck wound. It went ok, barring the fact that he was extremely timid and afraid to hurt me (no surprise there). But I think he did well. I still worry we arent doing it exactly right, but what else can we do- I cant sit in the hospital for the next few months just to have them do it for me. My doctor is trying to get an at home nurse to come change my neck wound but that would be hard because its twice a day, and my insurance might not cover it.

I also gave myself my first IV treatment without the nurse last night at 10 pm. It went well, and it is really easy. The Zosyn comes in these little vaccum packed balls that look like grenades, so you dont even neeed an IV stand. I can hold it in my hand or put it in my pocket and walk around while I am doing it which is nice. First, I have to take the medicine out 1 hour before to warm it up. Then, I swab the end of my groshong with an alcohol swab, then take a syringe filled with saline solution and get the air out of it by pulling back on the syringe as far as it will go, and then pushing up until one bubble pops out of the tip. Then, I screw it on to the groshong and squeeze about 1/2 inch, then release, then squeeze 1/2 inch, then release until the whole syringe of saline has gone in. That clears the line out, I guess. Then I undo that, swab again with an alcohol pad, and attach the end of the medicine ball to my groshong and flip the release button that lets the medicine flow in. It takes about an hour and 20 minutes to all go in which takes forever but its ok because I only have to do it every 8 hours (6 am, 2 pm and 10 pm). It sounds complicated but its really simple. I hope this gets rid of the infection quickly but still this morning there was a lot of discharge coming out of my neck. There is a worry that because my immune system is basically freaking out that my neck wound is healing faster than it should and there wont be room for the stuff to come out if it closes up entirely before the infection is cleared and then I would have to have it cut again, which I do not want to have. So in a way its like a race to clear up the infection before the wound shuts. Worst race I ever went to.

So thats that today. Still no more pain which is great. I was in so much pain before I went in to the hospital and its nice to not feel that anymore. Oh and the swelling looks the same today- not too bad but not great either.

Here's a picture of my 'Zosyn ball.' The things they come up with these days! I thought I was going to have to wheel around an IV stand or pump or something but its so simple. It basically deflates so when its all done you can see the core of it. Crazy.

To heck in a handbasket in 13 days

This has been a rough week. I was hospitalized last Monday for a serious infection in my new bone graft site (from my surgery a couple weeks ago). This morning just before I was released doctors said there isnt much hope for whatever graft will be left if it continues to stay infected. It seems the drainage is coming directly from the graft site and they think my body is rejecting this graft very aggressively.

I didnt even know I had an infection until Monday when I laid down to nap. I couldnt believe it when (yuck) stuff just came pouring out of my neck. I was beside myself. When I got to the hospital the doctors informed me that I was extremely sick. Now that I look back, that second week home I did have much more pain and had gone back to taking my hard core pain meds. Part of my heart feels I should have known then.

I am now on a long term antibiotic (Zosyn) three times a day in order to control the infection. I had a Groshong placed, its a central line to my heart, so I can do my own IV meds here at home and a nurse comes to help me with it. Doctors also had to re-open my throat on Tuesday to drain out the pockets of infection that were all up in my neck, and had to leave a hole open in my throat so I have to change my neck bandages every day three times a day and pack it with silver nitrate which will help the wound close naturally. Its still yucky in there and has a lot of drainage so it grosses me out. Chris is helping me with that and has been so wonderful to me, the doctors gave him a crash course in wound care Friday night and he is doing such a great job. The doctors couldnt sew my neck back up because of the chance of trapping infection inside so I will be stuck with an unattractive stretched out scar on my neck when it all heals up as well. Blah.

This has been such a hard time, I just feel numb. Its hard when you have gone through surgery to feel it was all for nothing, and to also not understand why your body is reacting the way it is. This graft was 90% my own bone, so in essence my body may be rejecting its own bone? Which is extremely unusual of course....but hey its me right.

I just wanted to update you all on what's going on. If you pray, pray that this graft is safe from the infection and I still have a chance.

Here are some recent pictures:

When I got home today (trying to stay positive), after a week of not seeing Aron, he is so happy to see me!

My Groshong, it goes to my heart:

The difference in the swelling from just the infection being drained, first picture is tonight, second is before I went into the hospital:

I am so sad right now. I sent Aron off with my mother in law because I just cannot take this pain and take care of him too. It's knocking me off my feet! I called Rite Aid as soon as they opened and gave them the prescription number and everything...turns out they said the prescription is 'non transferrable' because it was written by a resident not the doctor himself...ok my doctor has his residents do things all the time for him, I dont get why that is an issue, he was obviously writing the prescription on the doctor's orders right?! So I had to call Highland and ask them if another doctor could authorize the RX so I can get some pain medication. Turns out they are in a big meeting (typical) and wont be able to have anyone do it for a while. I am so frustrated! I know I shouldnt have waited so darn long but I really didnt see it was going to be a problem, and Vicodin is a pretty standard medication. I should have known, nothing's easy when it comes to medical anything. I hope it goes through because my only other option is to go all the way out to Oakland and have it filled in the pharmacy at the hospital which takes forever and I'd have to have someone take me.

Lots of fun stuff

So there's lots going on these days.

Oh wait, no there's not, there's just PAIN. Stupid freaking PAIN!! I am miserable these days!! My swelling is going down on the right (slowly) but for some reason it's making that whole area more sore, it throbs all day long, and the Vicodin makes it stop but I can feel it still a bit all the time. Its like the kind of pain that consumes you and is all you can think about. What I dont get is why is the side that seems to be healing first hurting most. The swelling has been 'pushed' to the left side of my face so its lopsided, I guess I thought that side would be more painful because of the swelling but its not. I am calling first thing tomorrow to ask about getting some of the Tylenol 3's. I am freaking because I only have 2 Vicodins left and I need them to sleep tonight so tomorrow morning is going to be miserable.

Here's my lopsided mug:

I have decided that my caloric intake is much less than the amount of energy I am expending every minute of each day. Its so frustrating because I cant open my mouth very far at all, I can barely get my pills in. Pretty much whatever I can eat has to be shoved onto the back of my tongue and swallowed (absolutely no chewing allowed) or it needs to be able to go up a straw. I am so sick of 'drinking' my meals every day, I feel like I will go crazy before this liquid diet restriction is over. I am tired of fruity drinks, tired of milkshakes, tired of Ensures, tired of soups with nothing in them just broth, tired of water, Capri Suns....I want a big fat juicy steak, a baked potato, some carrots and zuchinni! The past couple of days I gave up on eating and didnt take much in at all. Well, last night I was running a fever and every muscle in my body ached from walking around the hospital all morning, it scared me. I know I just have to keep eating, no matter how gross my allowable foods are *takes a nice big sip of her Ensure...puke*.

So boo liquid diet.

Also, boo to my inability to just freaking do things like a normal person. I admit I was a naughty girl today and decided to try to climb down our back flight of stairs (about 10 of them) and do a load of laundry it the laundry room. Bad idea. First of all, I got stuck halfway down when I realized it was a mistake but I was carrying a laundry basket full of dirty underwear and T-shirts so couldnt very well just go back up. I managed to make it back upstairs but was so out of breath I thought my heart was going to beat right out of my chest. You'd think I'd climbed Mt Everest. So when it was time to go back down and put them in the dryer, I got all the way down (which was easier without the clothes basket in my arms) and some lovely person had 'followed the rules' and closed and locked the laundry room door. I had left it open on purpose- damn rules- so I had to climb alllllll the way back up and get my keys just to go back down and put the clothes in the dryer. I think I will now be bedridden the rest of the day and when Chris finds out I did laundry he is going to have a coniption fit. Maybe he wont notice, sometimes it seems like guys think that clean clothes just magically appear in their drawers, so who knows.

It's just rough because I want to be able to do things, but I get so out of breath or I really start to hurt after walking around for a while that I have to stop. I want to be better now. I know its going to take time but its hard for me to know when to stop, basically. I just keep going and going until I am so out of it that I can barely move and end up laying around the rest of the day feeling sorry for myself and feeling about 200 years old. My pain control is another issue that has come up these past couple of days. The Vicodin seems to be too strong (it also gives me migraines and dry mouth) but the Tylenol extra strength just isnt cutting the mustard. So far today I took a Vicodin last night at 11 pm, then this morning popped 2 extra strength Tylenol since I always wake up in pain from sleeping on my cuts/face, and am now debating if I should do the Tylenol again or give in and take a Vicodin because of the physically draining morning I had.

Other than that thats about it for now...swelling looks the same today, but the bruises on my hips are really fading fast.

Today I got half my stitches out. It was uncomfortable but they did it and then they moved on to my hip incisions...lets just say those cuts were NOT ready to lose their stitches. Ouch. Pain. So I have been sleeping off and on all day and taking my Vicodin at regular intervals and am sore all over. I have to go back next Friday to have the rest taken out.

Yes, I can definitely see a tiny difference between a few days ago and today's pictures. The swelling is slowly starting to come down! I am so happy.

A few days ago (first pic), vs today (second pic):


Also, my last Vicodin was at 2 am. I am allowed to go 6 hrs between doses but typically am waiting for the last hour or so to come around so I can pop the next one because of the pain...well it is 11 am here and I am ok, just starting to feel some aching coming on so I took two extra strength Tylenols and am going to see if that is enough for a while. If not I will take another Vicodin, I want to see if I am able to start weaning off them every 6 hrs, but am scared of the pain coming back full force. Hopefully this is the start of an upswing!

Well, yesterday went well. Apart from losing my cell in the morning (we dont have a landline phone) and discovering it underneath the couch, I think things went better than I expected. Having gone back to the Vicodin is really helping and I am thinking of staying on it for a couple more days just to be sure.

I really have been tired of laying in bed so what I did yesterday was I took our office chair which is super comfy, piled 3 pillows on it to raise myself up, and then put the ironing board on its lowest rung and set up an ironing station where I could sit to iron. I have been watching it pile up and pile up in our room, Chris is so good with doing the laundry but wont iron, and I am a total ironing FREAK. Between that and drinking a mug of coffee (courtesy of a sweet friend from Hawaii, it was soooooo good) and watching Project Runway reruns I had a pretty good morning, but paid for all my sitting up later on with somewhat painful hips. My mom came at noon to feed Aron and then she laid him down but he decided not to nap. My biggest issue has been lifting him up, especially to get him into bed. Being two, he runs now when you call him, so diaper changes or even little things are rough as I have to go after him and hunt him down, then pick him up. My poor hips really arent ready for that kind of treatment but when its just me here I have no choice really.

Some good news- I was able to sleep on my back periodically last night without choking, which was a nice change and I slept really well. Also, when I woke up today I could swear it looks like a tiny bit of the swelling had gone down but I cant really tell. I just woke up so I will post a picture later on today.

First day alone

Well...half day or so anyway. My mom is coming around noon. Chris had to go back to work today. Do I feel ready for this? No. Especially since we discovered yesterday that regular extra strength over the counter products are not going to control my pain at all. Do I want to ask anyone for help again? No! I'm so sick of feeling helpless! Its really starting to get to me. I had a mini breakdown last night when I went to put Aron to bed and realized he only had 1 pacifier. Ok, where are the other 5 I ask Chris? He doesnt know. I cant crawl under the bed to get them myself like I normally would and I just swear I lost it because I had to ask him to do it. Not to mention the fact that he has been taking such wonderful care of me but he isnt me, our poor apartment has been so cluttered up with junk and papers and things not where they belong (someone forgot to read my 'dont be a flat surface abuser' post it note). So whenever I can I hobble around and try to pick things up but it always ends up where I wear myself out and spend the rest of the day in pain. *Whine.

So I mentioned the doctor felt that I could go off the Vicodin and try extra strength Tylenol instead. That was probably the dumbest suggestion anyone has ever made to me and if I see him on Thursday when I go get my stitches taken out he better run or I will probably kick him square in the nuts and then while he is on the ground give him a nice hot Brazilian wax on his nether regions, remove one of his fingers with a plastic spoon and then tell him to go home and not take any painkillers. Ugh. I woke up that afternoon actually writhing in pain and crying out, it was horrible. I have been able to sleep on my hips if I carefully move onto my side, so I have been doing so to alleviate the stress on my throat from laying on my back, but I didn't realize unil then that its only ok with a lot of painkillers in your system- it felt like someone had taken a blowtorch to my hips and I couldnt stop it, my face was swollen worse and even today I am still barely able to talk again. Poor Chris just stuck a Vicodin in my mouth and laid with me until the pain started to ebb but man I dont want to experience that ever again. The Vicodin both scares me and makes me feel better. I hate having to rely on them and would really like to stop taking them but I see I am just not ready for lesser pain relief of any sort yet. I worry about addiction, and I also worry about taking care of my son while on it but I have to. So, that is fun.

Other than all this, my swelling looks the same today which is a bit disheartening. I am so ready for it to start going down. When I went to the hospital yesterday people stared and stared at me. I hate it. I understand it, because I too would wonder what happened, but it hurts to feel like a circus side show freak when you are just going to a routine appointment. I am not looking forward to Thursday either because, as much as they say it doesnt hurt, having stitches taken out of your throat does hurt a lot. And my hips look like they have a million stitches in them too so I am wondering how they are going to feel, not to mention after another morning of walking like yesterday I am already going to be in a world of hurt.

Is it just me or does this blog just get sunnier and sunnier? Blah!

Here are some pictures of my healing hips which is the only improvement appearance-wise. The right side,where most of the bruising occurred, is really improving and the bruise is getting lighter, the left side decided to bruise up more but its nowhere near as dark or painful as the other side. Oh and excuse the underwear in the second shot (yes, ma, they are my sensible white cotton unders) I just want to how how the swelling on that side has really gone down, before my side was sticking out and puffy from all the bruising.

Post- op appointment

So today was my first post-op appointment. It went very well. The doctors seem very, very pleased with the results, and are hopeful that this will be it. They cleaned up my neck scar and got all the old adhesive off, then the doctor tried removing some of the stiches on my neck which hurt, so they decided they werent quite ready to be taken off. I do have to go back Thursday for that which shoud be fun.

The constipation is from the Vicodin, so they told me to stop taking it and try taking extra strength Tylenol at the highest dose possible for a couple of days and see if that is enough to manage my pain. I am skeptical of that since the Vicodin and Motrin hasnt been enough but I would like to get off the 'hard core' pain meds if at all possible. They did say that they could give me a prescription for Tylenol with Codeiene (Tylenol 3) if I need something harder. For the constipation they said try Metamucil and another dose of laxatives today. I really hope that lets up because at this point it has been more painful than even my hips. I did sleep a little better last night, the apnea is from the swelling and they said it shouldn't last more than a couple more nights, as the swelling in my face should start to go down soon, though it will be a couple of good months before it is down completely. So far I have only noticed the insides of my mouth arent as swollen, but the outside looks the same to me. My hips are looking the same, but my walking has really improved. I was able to walk all over today, though now I am paying for it with some dull pain in my hips from all the pressure I put on them but the dcotors were very impressed with the fact that I was so up and about already when they had estimated such a long period of time of recovery in that aspect.

So.....if this graft takes (basically in 6-9 months we will know for sure) then I will have to have another smaller surgery where they will take fat and tissue from my hip or butt (ha ha) and go inside my mouth and make a series of cuts on the inside where my lip has sunken in to release all the scar tissue that is in there that is pulling my lip inwards. Then they will fill that area in with my own tissues and sew it back up so my lip will be back out where it belongs and not sunken in. Then after that heals they will proceed on to implants. I am very much hoping that this all works as planned because I just dont think I can do all of this over again! So that is the news thus far. Again, thank you so much for the good thoughts everyone.

Here is what my face looks like today (one of them is from last night), as well as my neck scar after a few stitches were removed. My hips are looking pretty much the same.

Losing my mind

I am really losing it over here. This is night two of no sleeping...I checked into it and it is what my friend said it was, I am experiencing episodes of sleep apnea. It is so so frightening to just STOP breathing when you are trying to drift off to sleep. I will feel myself falling asleep then wake up with this weird snort/snore sound like something is caught in my throat. Sometimes I can actually feel my throat closing off when I relax. I have tried everything, including trying to lay with my face down (try that when your head is grotesquely swollen), trying to hold my mouth open so I can breath through my mouth and not my nose, and keeping ice packs on my throat all day to bring the sweling down. I googled it and I found that it can happen after facial trauma or surgery, but I am just praying it is only temporary and related to the hugeness of my throat right now, and not something the doctors did when they cut my throat or worked in my mouth, causing my airway to be resitricted somehow. That would mean another surgery to fix, and I just will absolutely lose my mind if I have to go through another surgery right now over something like this.

It just is horrible to me that on top of everything else- being hungry because there is such a slim range of things I can eat right now, my face being incredibly swollen, my meds not working the full 6 hour stretches I have to wait to take them, the bruising, and discomfort- that I have to deal with something like this on top of it. The longest stretch I slept last night was from 3 am (after I took my vicodin, which knocked me out) until 6 am. Thats IT. I am so tired, I NEED sleep!

I have my follow up tomorrow so I am going to ask the doctor if there is anything I can do in the meantime until the swelling goes down to make sleeping easier, or, in worse case, ask him if this is a permanent thing we are going to have to deal with now. Thinking back, I know the first couple of days in the hospital sleep was no problem, but was it because I was so hopped up on tons of different medications that it was knocking me out and I was still experiencing the apnea just not realizing it? This is just so scary to me. When will it end?

Lately I keep waking up because my throat is so swollen when I start to fall asleep something happens to my throat and it like closes off....I am praying this is just a side effect of the swelling and not something else that is 'wrong.' It is pretty hugely swollen. I dont know.

Home, day 2

Still a lot of pain and no way I lay is comfortable. I cant lay on my back because it makes my throat close from all the swelling and I cant breathe, but when I lay on my sides my hips start to hurt so bad. My face is even bigger today, I didnt think that was possible and whenever I look in the mirror I feel disgusted with myself. I feel very discouraged today and I just dont know how I am going to get through this. I am so of tired of hurting.

Not so hot

...feeling or looking that is. But I'm alive. Too much medication in my system for a real post so I will update you all tomorrow.

Pics from just now, of the swelling in my face and my hip, only posted one of my right hip but both hips are cut and bruised. I pray this ends quickly, I am in so much pain.

Tomorrow is the big day

I have so many mixed emotions about this surgery right now. Part of me wants to get it over with but the other part is just so scared. I havent been sleeping well at night, probably because what I have been doing all day is running myself until I am ragged, then taking a nap because I am exhausted, then as soon as I wake up I start going again. I know that's not healthy, on top of the fact that I am not eating much at all (I havent eaten yet today) and am drinking copious amounts of coffee to keep going. Reminds me of my college years all over again, and this is like a final exam- with a bit more of a painful ending result.

I always realized I was a control freak but you just dont really know how bad you are until you have to relinquish control of everything to everyone else...I think in a way that is why this is all so so frightening for me. I caught myself yesterday, after instructing poor Chris exactly which color sheets to put on the bed for when I get home from the hospital (the navy blue ones, so they dont show blood) and I think that is when I first realized just how awful this obsession to be in control has become. Its pretty much out of control and thank god I have a significant other who loves me, because there are post it notes all over my house with instructions on them for when I am gone. And in case you dont already think I need to be committed, here is just a taste of what those post it notes say: 'Check the mail every other day or the mailman gets mad,' 'Don't be a flat surface abuser,' (courtesy of my good friend Shannon, it means dont be stacking old mail and junk all over the end tables and top of the computer armoire etc), 'When Aron says "CAW" it can mean either cookie, car, or that he wants to color,' 'Dont forget to check the temperature of Aron's bath water,' and 'Make sure the top and bottom locks are locked on the screen door if the front door is open so Aron cant get out.'

Yes, I know.

So there is the control I wont have over my home while I am in the hospital, not to mention the control I have to give up to the anesthesiologist who will be putting me under, and the doctors who will be performing my surgery (both of whom get the perfunctory 'please remember I don't want to die at 26' remarks before the anesthetics kick in). Then there's the fact that once I get home I will not be able to walk or clean up the house like I am used to doing...I dont know what I will do then. I tell you its enough to make my head explode. Perhaps I will play my Sims game on my computer and just fire the maid, then I can clean my Sim family's house neurotically, or just move in a new person who is exceptionally messy and clean up after them all day.

Yes, I know.

So anyhoo, these are thoughts that a frantic person like myself has before surgery. Today I went and bought a ton of Ensure (darn those are expensive) and things for Chris for dinner that he doesnt have to cook, just pop in the oven. I am taking care of all the laundry and ironing so that it wont plague me while in the hospital- yeah I will ask myself 'I wonder if Chris is wearing a shirt he didnt iron'...and of course once I am able to, I will update you all on how I am doing, with pictures and everything. Today is my first day of documenting before and after pics, so here are the last pics of me with my old titanium plate in from the side and the front:

I hate this

I hate how I feel before surgery...I am tired all the time, sleeping during the day, no energy, stressing out, crying all the time, emotional, cranky, upset.

Blah.

Well, they called and changed my pre-op to....today! Argh. I guess they lost my last panoramic and lateral x-rays so they need new ones before Friday. So I told them if I come in to do x-rays today I am doing the whole bit and that's IT. So off I go for bloodwork, full medical history write up, release forms, anesthesiologist and x-rays- all with a 2 year old in tow. Fun.

Getting ready

So today was fun...the doctor called to schedule my surgery date and my pre-op appointment. Naturally I had known I was having surgery here on the 11th or 12th but for some reason this just ruined my last good week. I am a bit of a "if the date is not here yet I won't think about it" kind of person, and honestly that is how I get through this surgery stuff by just not thinking about it until I have to. So it really just put it back in my face I think and I started to get really anxious and worried and just all around unhappy about the whole thing.

Anyway, so the actual surgery date is the 11th of September. Call me supersticious but not exactly the date I want to be operated on (911 anyone?!) but I take what I can get. My pre-op is this Friday, I will meet with the anesthesiologist and get all my bloodwork done that day so I can go under the knife the following Tuesday.

So here's my fun story. We get done with all of that planning, and I go to finish my laundry...come back and there's a message on my phone from the doctor saying they want a mold of my face so they can see how far back to place the bar and can I come in 'as soon as possible'....as in today, right now. Ok...so can I bring my son (he's two)? Usually I'd just stick him in the bathtub with a can opener and a can of spaghettio's but this just isn't a good time with him teething and all. So he says sure, as long as he can stay still for 15 minutes guaranteed so we can get the mold done. Um, yeah...he is two. My 7 year old cant even stay still for that long with any sort of guarantees, heck I'm not even sure I can at this point I'm so darn nervous. I decided to call my mother in law and ask if she can watch Aron. She is actually home, so she says yes.

So I grab Aron in his pj's, no shoes or anything, grab my purse and walk out the front door only to realize, as the screen is shutting, that my keys are on the computer desk inside. I grabbed the door but it shut before I could get to it. Of all the times for it to close on its own, the darn thing sure as heck wont close when I am in a rush and just want it to do it for me, but it will close when my arms are full of groceries or, in this case, when I am staring at my keys sitting on top of the desk. And, of course, today is the day that the landlord is at work and my fiance started his new job in San Francisco so I am basically kinda up a creek without a paddle.

So there I am on the porch with NO keys, a toddler in his pj's and thats about it (who, by the by, decided then was a relaxing time to relieve himself along the number two course in his diaper, of which I had no replacements with me so the smell made it all the more special of a time for us), and I just break down crying. Looooooooong, crappy story somewhat short, my daughter didnt lock her car door (I'll never yell at her again for forgetting to lock her door) so I was able to get the carseat out and mother in law came to pick me up and I ended up driving her car (most cautiously I might add) to my appointment. I did have to cut the carseat out because we had it secured using the LATCH system and it was like an iron vice, I just could not get it out so I ended up ruining the leash by cutting through it and will have to buy another one, but it all worked out.

So the impression got done, they stuck an oxygen thing up my nose then stuck my face in a big pile of amalgam, or whatever it is they use for impressions, so that was fun and most importantly, is now done and I dont have to go back until Friday. Phew! I'll keep you posted from here on out, only one week left.

What's new

Sorry I havent posted in a bit, getting ready for my next big surgery here which will be Sept 11th or 12th. As usual before any of my big surgeries the fear starts to set in...I start to think morbid thoughts and pretty much just try to prepare myself for anything that might happen. The scary thing about surgery is really just losing all control. I am pretty much a self-admitted control freak, so basically the whole putting my life in the hands of the doctors and the anesthesiologist freaks me out a bit. Today I didnt eat until about 1 and even then I had to force myself to eat because I was shaking from my morning '6 cups of coffee' routine.

On the home front things have been rough as well. As if I don't have enough on my plate, my daughter's most recent ADHD medication just isn't working out- unfortunately we find this out less than a week before she starts the second grade. Argh! We have yet to have an 'official' diagnosis, so this whole med game we have been playing is getting really old. I am looking forward to when we can find out what all is wrong and address the issues instead of just saying 'well lets try this med and then this one,' etc. Fortunately she is going to be evaluated by the school psychologist this winter and maybe then if we can get a referral to go through with her medical insurance we can get her in to see a specialist. I am not yet satisified with a simple unofficial diagnosis of ADHD through the pediatrician, I have suspected since I first began my research on ADD and ADHD that she has sensory integration issues and possibly some bi-polar as well. Without her being on meds (she has been off since Friday) she has been an absolute wreck, and consequently so am I. So much for resting up before major surgery huh?!

I have decided that this time around I am going to document my surgery, so if you are squeamish you may not want to check any of September's entries ;). I want to take pictures, including before and afters. The new plate they will be putting in is going to be significantly smaller than this one I have now, and set further back. They are also aiming for a more feminine jawline, which is less angled and squared off. My 'old chin' and jawline was fairly pointy, so this new one I have not liked as much and have never gotten used to the chin part jutting out as far as it does (I hit it on everything). Its not all about me not liking it though, the skin is really stretched thin because it's way too large for my face, and my poor bottom lip is sinking in. With them making it less squared off they are thinking it will ease that lip a bit so its not so tight.

They are taking bone from both of my hips this time instead of just one hip and from the front (anterior) instead of the back (posterior). Usually the posterior hip bone is larger but in my CT scan it showed mine are larger in the front so they will make incisions in both of my hips and take the bone and then cut my throat again and graft the bone into place as well as replace the bar while they are in there. It has been so long since I have had big surgery like this one (the ones from that first major surgery/tumor removal up til now have been smaller) and I do not remember much but I do remember two things: the pain and the horrible swelling. Yet as with all things I do what I have to do. Hopefully this time is the charm. I'll keep everyone updated as well as I can. If you can spare exra good thoughts and healing vibes, send them my way!

Well I havent posted in a bit so I thought I'd add one today. Things have been crazy since my daughter has been out of school for summer vacation and I am always on the go.

The yahoo ameloblastoma board I go to has been really bustling lately. I don't know if that makes me happy that I have others who I can read stories about and relate to or saddened that yet more people have had to go through this horrible experience. What I find is that everyone is in a different place in their journey with ameloblastoma. Some have not started it yet, having just recently received their diagnoses. But all are very very strong men and women who have had to (or will have to) deal with it, period. They have no other choice, and for me it is interesting to see the varying degrees of how people deal. I find some are where I was a while ago, in a place of denial and anguish over where they are now and some are finished with everything, their bone grafts and implants and are happy with, or at least come to terms with, where they are now in life. I wish I could take this away from them and deal with it myself, and I dont even know them. When I think of the turning point in all of this for me I realize it came about when I found others going through the same thing.

My heart goes out to those who are struggling emotionally with this, as I am too...for me there is no such thing as "doing better" anymore. I find myself in a state of just...waiting. Of course I mean waiting to hear back from my surgeons about my next surgery which will be coming up soon, but also just waiting as in I find myself wondering if I will ever be done with this situation in my life. Will I ever get back to some semblance of normalcy? It feels like since this all began my life has been surreal almost.

I had what I like to refer to as a "situation" happen this weekend. We went out of town for Chris' birthday and on the first night he wanted to eat at this particular seafood restaurant. Now, I am getting better at eating out in public but I tend to stick to places that have booths where I feel somewhat sheltered, but this place had all tables and chairs set everywhere facing each other. I felt too 'out in the open,' perhaps that is why I automatically started to worry and be uncomfortable. So onto the "situation." There were these two women at the next table over blatantly staring at me. It has been a long time since this has happened and I didnt know what to do. I don't mean just staring as in 'Tina, you're so dang paranoid.' Like everyone just wants to look at me, right? But they were gesticulating towards their chins and rubbing them and pointing at me. How much ruder can you get? Seriously, some people have no tact. If I want to talk behind people's backs and be rude I at least have the decency to do it behind my hand or not look right at them, lol. So I started to cry and my face got all hot and I was not able to enjoy the rest of the meal. And it was Chris' birthday too. I felt terrible, no only at myself for going backwards in time to a place I hate to be in but for not being able to just get over it for his sake.

Perhaps I am just rambling.

Anyway. Recently, as of yesterday, I have had an aching in my jaw. Its on the left hand side underneath...it hurts when I talk. Not bad pain but its painful nonetheless. What's funny is its not too bad when I eat but it is when I talk. Maybe thats God's way of telling me I talk too much. ;P It is worrying me but as I will see my surgeons soon I am trying to put it in the back of my mind. Maybe I slept on it weird. I am also finding it increasingly difficult to keep my mouth closed. I know I have mentioned this before but its getting harder and harder to do every day. I mentioned we went out of town this weekend which meant eating out a lot and it became very clear to me just how hard it was getting to be after being out and about each day- by the end of the day I had such a migraine from trying to keep my mouth closed. Sometimes I just couldn't anymore and I make out that I am leaning my chin on my palm like I am thinking but really under my hand my mouth is gaping open just for some relief. Its frustrating.

So thats about it for now, sorry I am so all over the place.

A couple newer pics:




The other day Chris found a picture we had taken together a long time ago when we first started dating. He showed it to Aron and said "who's that?" and pointed to me. Aron didnt say anything. Chris said "is that mama?" And Aron just looked and looked. Then I realized what was going on- he didnt recognize the way I used to look! It made me sad, but I also know he has never known me to look any differently and he still loves the heck out of me.

Feeling some shock right now

Doctors say the bar in my jaw (or rather the bar that IS my jaw) looks like it is getting ready to break through the skin of my chin so they have to remove it and replace it with a new, smaller one. I have seen it getting tight there and you can actually see some of the bumps, it looks like a bike chain almost, pushing through on the underside of my chin on the left hand side. That side healed up crooked so I thought that was the only issue, this is a whole new thing to me that this could happen. The area has tightened so much my chin now juts forward and it is pulling the skin on my face too tightly. This has sped up the big surgery date to more like beginning of August (also my 26th birthday- Happy Birthday, Tina- now lets cut your face open again!).

In the same surgery I am also going to have both hips cut and bone taken and then put in my mouth. Dr's will have to cut my throat again (this is the 3rd time) to put it all in. I am feeling so anxious, scared, sick and nervous but because of the problems we are having with the bar it looks like this surgery will be sooner rather than later as I had hoped. With both hips cut I will be laid up for a while- how can I care for two small children when I cannot walk? I have a toddler and a 7 yr old, and we happen to live in an upstairs apartment. *Sigh.* This does not help with my nerves!

I actually had two options, one was to go with a new doctor and have the fibula used in some procedure called a fibular free flap, which has a higher success rate but only by 3-5% higher. The problem with that, the dr, said is finding someone who would take my case with my kind of medical insurance. If I do this surgery that we are thinking of doing I stay with the same team of surgeons, and no problems with trying to find a new doctor- that really speeds up the process. So I am thinking I am going to go ahead and do this now, before the bar breaks through and I have a whole new host of problems to deal with. What scares me is I wouldnt even know if the bar was about to come through until it just popped through the skin and started to bleed, because the area where it is coming through is completely numb. I lost all feeling in my chin when they severed that nerve back during my first surgery.

The hope is that this time around it works. The surgeon said that with the first surgery I had it is usually about a 90% success rate so they are unsure why mine failed, I am only 26 and healthy otherwise (as far as we know). But I had just had a baby 4 weeks before my big surgery, as well as the fact they only took bone from one hip and there was barely enough so that may have all contributed to the first failure. This time I will have in depth scans to measure the bone in both my hips so they know exactly what they are working with beforehand. Hopefully this time is the charm and it works, so I can get some bone in there for implants or at least a denture.

Anyway, just wanted to let everyone know where I stand. I feel so many emotions right now its hard to even think.

Moving past step 4

Five Stages Of Grief (Kubler-Ross method)

1. Denial and Isolation.
   At first, we tend to deny the loss has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
   The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
   Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
   The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
   This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

Why cant I go beyond step 4?? There are times I think I am there but more and more I realize I am not. I think part of this is because I fear that acceptance means giving up. Like, am I going to to be like this forever? I cant accept that, no way.

Its not just cosmetic, dont get me wrong. The fact that they severed the nerve that controls feeling in my chin will not change, I will never get that feeling back. But it's not just that- I cant keep my mouth closed very easily. When I am out and about I struggle with it as no one wants to be walking around with their mouth gaping open looking simple minded. I have migraines from trying to keep my mouth closed all the time. I cant be out for more than a couple of hours at a time or I start to get anxious and tired from focusing on how my mouth looks.

Part of me thinks I wont be this way forever if I try hard enough. I think I can find someone who will help me fix my face again, but where? If I move beyond the depression and accept, does this mean giving up? I just dont know. I am tired of being depressed.

These are the best years of my life and they are moving away from me so quickly.

Some new pics

Just some new pictures. :)

Ashley (7 years old):

Aron (20 months old):

Ok, so an update on me. I had a doctors visit for myself for the first time in I dont know how long. Basically my panic attacks have been out of control. Just always thinking I am going to die from some unknown thing has gotten to be too much for me. The doctor put me on Buspirone (BuSpar) which I have to take 3 times a day. He said basically I am suffering from anxiety disorder compounded by a form of Post Traumatic Stress. That would explain why the attacks are coming now, after I felt I had a handle on things emotionally- obviously I don't. I am so against medicating myself but its obvious my futile attempt at homeopathic remedies just isnt working.

So far I havent seen much of a difference, despite the fact that I havent had a panic attack since taking the medicine. The skeptical side of me wonders if that is from the medicine or is another attack waiting in the shadows and I will have one and realize I've been filling myself with stupid meds for nothing. The doctor also ordered a complete blood work for me, I am going in next week, and then one week later going back in for my results and to decide if I want to continue on the BuSpar or not. Thinking about it does trigger my anxiety again but I think it will all be ok, and hopefully this will lay some of my (ridiculous) fears to rest. I have never really been a paranoid person, but then again I have 'never been' a whole lot of things recently.

As for my appearance I am okay when I dont think of it. I do wonder if I will ever have my face fixed. I would very much like to, I hope that bone generates over time and maybe it isnt too late for me still. But I am not an expert about that at all. Part of me (the hopeful part) wishes that later on down the road maybe in a year or two, I can have more bone grafted in and it will take so I can get the reconstruction done. But it only comes out every once in a while. I still have more bad days than good, which is frustrating as well. But I am dealing the best I can with what I have been dealt.

The Ameloblastoma survivors group I was shown on yahoo I thought would be so comforting to me is a double edged sword. I feel comraderie with these others who have been through the same things I have...then I feel anger at those who had small tumors removed or have been successful in their reconstruction or who have kind doctors who understand them and I havent (and don't). I guess because I had such a large tumor and so much of my jaw removed that I almost feel like I am on another planet from others, even though we have gone through so much of the same. Then I feel guilty for feeling these things. So lately I have tried to stay away. How sad that I cant be happy for others, when what they have is my greatest wish for myself. It makes me feel so selfish.

Lately when I sleep I dream that I get a call from Montel or Dr 90210 and they say they are going to fix my face. Then I wake up, and its back to reality.

I sent this in an email to a very good friend, and wanted to add it here as it sums up my most recent feelings.

Sometimes I wonder if I wasnt rich and famous would all this be behind me already? Its so hard when you are lower income to get people to take you seriously, and to get things done, especially medically. I have had thousands of dollars worth of surgeries done, and am facing about the same cost in terms of fixing the damage this tumor has done to my face. I have found the Medi-Cal system to be ridiculous (CA's low income medical insurance). They do not care about you unless you are dying- their care in terms of preventative medicine is just absurd. The team of surgeons I was working with did a lot for me in the initial removal of the ameloblastoma, but I started to feel like a walking tumor, not a human being dealing with a life altering disease. I am so tired of all of this.

Sorry I havent posted any updates lately. I have been trying very hard to up my morale, and it seems to be working. The last time I was at the doctors they told me I should talk to a health care professional and get on some sort of anti-depressant. Translation: we think you are on the verge of cracking and you need to see a shrink. After talking to a few people about it I realized I didnt want to be relying on pills for my every day existence. I have never been one to like medications much anyway. Granted I could surely use the advice of someone in the field who could help me on this emotional and physical journey I am on but sometimes the red tape just seems too much for me to handle, especially right now. The way my medical insurance works, it has to be falling off or gangrening in order for them to push a referral through.

So I have been trying to do things in the meantime to naturally boost my morale. The biggest and best thing has been getting out of the house. I knew alot of my depression was related to my anti-social behavior and hiding at home but I never realized how much. To anyone suffering from depression or anxiety, I tell you this is the BEST thing you can do. Its amazing what a difference getting out there among other human beings has made to my overall emotional state. I have been in such a better mood because of it. The past few days I have been walking to get my daughter from school. We live a little over a mile from the school and half is up hill. I walked it one Sunday afternoon with Chris to get a feel for it so as not to get in over my head with a 20 month old in a stroller and me deciding my poor little legs just could go no further.....surprisingly enough it was not that bad at all! So I have been trying to walk to get her when its not raining and Aron and I both really enjoy that. Its amazing how great I feel after walking two miles every day.

Along with the walking I have been drinking less soda and taking multi-vitamins. I have also been indulging in hobbies and passtimes that really enjoy, such as reading and cross stitching. These passtimes are oft forgotten once you enter mommy hood, but they are so needed in order to make you feel human again! Spending more time doing those things rather than sitting on the computer has really helped. Dont get me wrong, I love my online mommy friends dearly and have known some of them since November of 2004 when we first found out we were pregnant, its just that I often find myself so immersed in the online world that hours pass and when I find myself back in reality I am faced with a dirty house, clinging children and having felt like I did nothing for myself that day.

So all in all, I have been taking better care of me. And it has been working very well! Of course that's not to say that it still isnt always in the back of my mind about what happens next...I have yet to hear from the surgeons about when my next surgery will be and what all it will entail. Chris mentioned the other day that I need to call them myself but I just dont know why that is so difficult to do. I think in a way that is just me, I like to say 'I will just live today for today and not worry about tomorrow,' but in reality its very important for me to know the next step. If I just wait for it to hit me it may hit me very hard and I dont know how I will deal. So I need to get the courage up to call. I will let you all know what happens when I do.

Today

Today I am feeling a bit better about being in my own skin. Of course I haven't heard yet from the surgeons but hopefully I will continue to be on the upswing for at least a little while. I actually did my hair and eye makeup today. I havent worn makeup in almost 2 years now, so it felt nice to do that again. Before, I would put mascara on then go wash it off and cry. Anything that would draw any attention to my face really made me uncomfortable. But today I thought I'd try it again, and it felt good when I looked in the mirror. I feel so encouraged by this, as it's a sign I am making a lot of progress inside.

I have also been trying to get out more, Chris and I make sure to go out at least once on Sat and Sun, each time we do I feel stronger and stronger. Someone told me the more I go out the easier it will get and they were so right. For that time when I am out among others I feel human again, and it really helps to lift my spirits. Just a short time ago it would be agonizing to leave the house and I'd have anxiety attacks thinking everyone was staring at me. The more I go out now, the easier it is to say who cares if they stare? I could look alot worse for what has happened!

Things I need to work on still are: eating in public (I have yet to try this out) and seeing people from my past. For some reason it is much easier to not care when people see me who have never seen me before and don't know that anything has changed in my appearance. I dread seeing people I used to know, and worry about what they will think. What frightens me the most is that they may feel sorry for me and think "Poor Tina, she used to be so attractive" maybe because I think it will make me start to feel sorry for myself again, which I am trying so hard not to do.

Finding confidence in more than just looks

I never realized how much I always relied on my looks growng up. I was always fairly attractive, barring that ugly duckling stage we all tend to go through in pre-pubescence and early adolescence. I never had a hard time getting guys to ask me out or pay attention to me, could just flirt a bit with the guy behind the counter for a discount or some favors, etc....looking back on it now I do wonder if I ever really knew who I was, in fact, know who I am. Society places so much more emphasis on beauty rather than brains or personality....why is this so? And why as little girls do we grow up thinking this is all that matters. Back then, for me a bad day was a zit on my face or a horrid hair day. In the end, beauty fades and what are we left with? I suppose it's best for me anyway to find who I am now, it was bound to happen one day that I would no longer be attractive, I guess I just imagined that day wouldn't come so soon! So, I'd like to learn to love myself, flaws and all....love myself for whats on the inside. And I'd like my daughter to do the same, and my son. Heres to a lifetime of finding my confidence, based on more than just looks!