Snow White vs Evil Queen

Sometimes I feel like I am bipolar. There are days where I am fine with what I have. I can live my life in peace with amelo. Its like, I look into a mirror and say, wow I look good for what I been through. Great jobs Docs!




Then there are days where I want to crawl into bed and go to sleep, praying when I wake up this will all be a nightmare and I just have dreamed this past year and 1/2. I look and say OMG who is this person? Scar on my neck and leg. Missing 4 teeth. Ugly smile. I look like Frankenstein, I look like a witch. I know in reality I don't but it's how I see myself on those very dark days, like today.



I'll get over it.

What about my leg

It’s an odd thing, having Ameloblastoma. In order to fix one health problem you have to almost make another. Well if it was not my leg it would have been my hip. Oh boy. My leg has been bothering me lately. If I take my fingers and place them just above my ankle bone a run it up the fibula (or what is left of it) I can feel where it ends. That is where it hurts. Not massive pain but sore. It comes and goes.

I also notice that when I wear heels, high heels my leg bothers me more. Especially in the back of my ankle. So I have been wearing low heels or flats. Which is sad because they are some really NICE shoes out there. PRADA anyone?

Also my foot does not flex up all the way. I can point down with no problem. It's the point up that hurts. My big toe curls under. So when I walk I have to be conscious of not stepping on my toe. Its not as bad as I am probably making it sound. But its bad enough. I noticed this back last February and I hoped it would be temporary. but it stuck. I have been doing some exercises to help. But so far, it has not.

On my own

Well it’s been almost two months since my surgery. I am very happy as my smile is almost back to where it looks normal and not one sided. That’s the good news. The bad is that I am still dripping all over the place when I drink out of the right hand side. I forgot once and made the mistake of drinking a can of diet coke without a straw. It ends up mostly on my shirt and my sofa. *sigh*

I finished my antibiotics last week. So now I am “on my own”. Meaning, now that I am relying on my own body to heal and with my track record, I will get an infection and die (sarcasm). No, seriously I hope for the best. Numbness right now is about a size of a large half dollar, which is a little larger then before. I wonder if this would be permanent, but I remind myself to give it time. Though I do get distressed if I have food on the right side of my chin and I can not feel it. That and it’s a little embarrassing.

Yesterday I met an angel.

When I was at Johns Hopkins yesterday, I went to see someone who just had surgery for the same thing I have. I met her online at the Yahoo! Support Group. She was still in ICU. I have to say for the kind of operation she went through, she looked good.

As we talked, (as best she could, bless her), I was reminded of my experience after surgery. The worry of what I would look like, what will I be able to do and NOT do. Doubts that I had in getting this operation done. And the fact I was very uncomfortable wearing nothing but that thin hospital gown.

I brought along a little get well package filled with Medera cream, Ensure and a get well card. On the bag I wrong Ameloblastoma Support. I think its good to talk to someone who has been through this same operation. As much as family and friends are there, they just do not understand.

Recovery takes time. To my angel out there in Baltimore, you're not alone.

Back to Hopkins

Today I met with Dr S to make sure I did not get an infection after last weeks mess and to work out a game plan. The good news is that I do not have an infection (HAZZAH!). The top of the implant I see in the back of my new jaw is the cap part. Not the cap that would sit above the gum line. This cap is to make sure no tissue goes into the implant. He confirmed with me that they will be trying to replace the two implants that were taken out in February. (Guess Dr B did not realize he took out two.) Also will be shaving the bone that grew over the implant. All this will be done in June. He just said to keep rising with Peridex to help keep my mouth clean. So here is hoping that I will get teeth for Christmas. :)

If you don't tell me...

As promised, Dr B called me at 7:30 this morning. I informed him of what happened and he did not seem too worried as far as the stitches coming out. He did tell me that Dr S should have called me back. DUH! But he knows my track record of getting an infection all too well. He said that if I wanted to I could put a moist gauge to help cover the opening. He also said he would email or call Dr S to have him call me ASAP. He noted that he thought Dr S was out of town but was not sure if that was a few weeks ago or now. Well, I thought if that was the case then why would the receptionist at either office not tell me this. This I could understand. But all I got was he will be in tomorrow or this afternoon.

No word as of 11am, so I decided to call his Towson office. The receptionist put me right through to him. Guess what? He stated that he was away and just got back on Monday! Really? Well why the heck did his staff not tell me. I would have understood. It would have saved me some aggravation this past week. I told him that. Grrrr

He did not seem too worried about the opening. He said he would see me on Thursday and take a look to make sure there is no infection or swelling. He did say he would put in two implants that did not have to be done in the OR. We of course would talk about this more on Thursday.

Ok, now my anger went from being directed at him to the office staff. That is pretty messed up. If you don't tell me how will I know. Just wait till Thursday.

Why are some people just plain stupid?

Well, the doctor did not call me back. Again. I have gone from being miffed to down right irate. I left two message for the doctor today, one at the hospital and the other at his private practice. Now I have to say the people who answer the phone at the Dentistry and Oral Surgery Department are either very over worked, understaffed or just plain rude. I think its the middle as I see what happens when I wait in the waiting room. But I was told something on the lines that she would try to give him the message or have him call me. Try? Well I will try not to get an infection and die. Now his practice said he was not in till Tuesday. Fine. At least she was very nice and sincere when I called. Rather deal with her then the hospital. Well I had enough by the evening and decided to call the hospital to get the ENT on call. Little did I know I would be crying for 20 minutes after I got off the phone.

My call into the hospital did not go well. The person who I was taking to said there is no ENT for Oral Surgery and I would have to speak to my doctor tomorrow or just got to the ER. Frakkin b. This is not what the sheet of paper I got said. Clearly if I need help to call and ask for the Oral Surgeon on call. She would not hear it. I told her I was frustrated and hung up. I then proceeded to cry for what felt like a million minutes. I don't want to get an infection. I don't want another surgery. Don't they know by now I had enough. I want to be free. Part of me wanted to go and curl up in my bed and cry to sleep. Another part wanted to go right to the fridge and get some beer or vodka. Fuck this. Sorry the language but enough.

I called back and switched my tactics a little. Thankfully I got a different person. I said I wanted the Otolaryngolgy ENT on call. Now I knew they had one of these. The person who was very nice just asked me three questions: Are you a patient? Yes. What is your name? Laura. And what is your phone number? I gave that with no hesitation. She then preceded to transferred me to the ENT Resident on call for Oto. As I was explaining to Dr Masion, I think that was her name, all the stress that I just went through came out. I was crying. Really bad. I apologized but she was sympathetic. She stated to keep trying to reach Dr Sinada but she said she would talk to Dr B, my plastic surgeon and let him know what was happening. He has a clinic on Tuesday and would try to call me. I know he would call because he never failed to before. She said to keep taking my antibiotics and my oral rinse. She did not tell me anything I already did not know, but it was a comfort to speak to her non the less.

I have never had any issues with this hospital before. I hope this would be the last.
But until I get a phone call back... I think I will just curl up and go to sleep.

I am going to get an infection and die

I think someone cursed me. I really do. That or the stars are not aligned in my favor this month. The stitches where they closed up the incision they made inside my mouth have come out. Too early. It’s wide open. I can see the top of one implant and if I am not mistaken, bone. BONE! *sigh* Left a message at my doctors office to make an appointment. Good thing I got some antibiotics and pain killers last week. Of course, with this much of an opening I am sure now I am going to get an infection and die. Hope it’s quick.

Seriously, this just makes me depressed. Why can not I be done with all this? If it was not for the initial infection I got last year I would have been done. DONE.

Happy Monday.

Case of the vanishing implant

I heard back from Dr B, he was the one who removed the titanium plate back in February. He confirmed that he only took out one implant that was loose and was in the path of the fistula. So, that leaves the question. Where is the other implant?

I know I am not the smartest person in the world but I don't believe my eyes are deceived. It looks like 4 screws to me. I left another message with my oral surgeon to call me back ASAP. I need to know what happened. Plus I am still a little miffed about Tuesday.


Thank God its Friday!