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.
Thursday, November 29, 2007
Tuesday, November 27, 2007
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.
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.
Sunday, November 18, 2007
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.
Here's a picture of it, I feel like I should name it since its so big.
Sunday, November 11, 2007
"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."
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."
Friday, November 9, 2007
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.
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.
Wednesday, November 7, 2007
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.
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.
Subscribe to:
Posts (Atom)