I want my date...

I want my surgery date now! Not too demanding am I? I really hate to say this but I am so use to this its not even funny. I mean it will be my 4th surgery. I called the Doctors secretary to make the appointment but she did say she would have to call me back. I just want to know what my schedule would be for the next two month. Not that I am planning a lot. I did decide to go over to see my brother this week rather then wait till February. I know we will hit Disneyland again and perhaps some museums. It should be fun.

I am still swelling a little in which I drain myself by pushing on it. Stuff still comes out. I just hope I am not making it worse. I think when the plate comes out I will frame it or turn it into jewelry. I AM serious! LOL




Hope 2009 will be better then 2008.

Happy New Year

I knew it, another surgery

I went to see my doctor at Johns Hopkins yesterday. I told him what happened; the swelling I started to get and the evil stuff coming out inside my month. Before I could give any more information he ask me if I was done. By done, he meant its time to take the plate out. I said YES.

I made sure he was aware that I wanted to stay in the hospital at least two days for observation. Based on my past history of getting an infection I thought this would be a wise move and he agreed. The only bad part is I would have to wait till next week to get a date for the surgery as his secretary was out on vacation. Lucky her.

My fear is after this is all said and done it will not work. Meaning my issues with swelling will continue. I pray that I am worrying for nothing and all the stars, planets and moons in the universe will align and I will be fine (over dramatic I know). But my ultimate fear is that my stupid Ameloblastoma will come back. I know there is always a chance. I hope that the doctor got everything out during the first surgery. But it only takes one cell left behind. Just one for the tumor to develop again.

Happy Anniversary

Saturday, December 20th will be my 1 year anniversary since I had my surgery for removal of my tumor and my reconstruction of my right mandible. I remember this time last year I was saying goodbye to my fellow co-workers. I was packing my suite case for my overnight stay at a Baltimore hotel. I was thinking about what I was going to have as my "last meal" before the surgery. I never thought I would still being dealing with issues one year later.

My chin is slightly swollen again. Nothing compared to what it was a month ago. But the bad part is I have leakage inside my mouth. Two in fact. If I put pressure under my chin I can see the "evil stuff" come out. Not massive mind you but its apparent that its leaking under pressure. I do have plans to see the doctor on Tuesday. So I am sure he will be glad to know. I will update the blog when I come back.

I am so sick of this. If the plate has to come out, lets take it out now. Lets do whatever we have to do so I can move on. I don't want to worry any more about this. It seems every time I start feeling better about myself something happens. I know I am so lucky in the cosmic sense but enough is enough.

I think when I do get the plate out I will frame it. Put it on my wall to remind me what I have been through. Hope the surgery will not interfere with my trip to California in February.

I feel creative

For the past few days I have been feeling a little creative. I want to do something to help others or help myself even regarding Ameloblastoma. I get so frustrated that there is nothing and I mean nothing about it anywhere on the internet other then the wonder support group that I had found on Yahoo. I even checked out NORD (Nation Organization of Rare Disease) to see what they have on this issue. Not much. I got the print out from the site that goes over what they have on it. It’s nothing that I have not found on other sites like Web MD. Even the American Cancer Society lists nothing on it. I know it’s rare for this disease to be cancer but NORD lists that as a link for information on Ameloblastoma.

I would love to start a foundation or try to put together a symposium of some sort. However, I have no idea how to start one. Plus I do not have the time or money right now. But it will be on my mind for awhile. So to appease the part of me that wants to do something I have decided to create a video. Not a 10 minute piece but 2-3 minutes of factual information of what one can go thru with this disease. I am not sure how to go about it and it will sure take some time. I will most likely be a very basic video with slides and photos set to some sort of music. But I will figure it out. Guess this will be my little holiday project.

Any one has any suggestions…

And now... we wait.

Not much to report. My swelling is down considerably. I don't wear my prosthetic too much as they aggravate me a little. But I guess I am really waiting for the implant screws to heal. Perhaps they will work better after that.

I also am waiting for my face to swell again. I know I should be positive but my history would say otherwise. Guess time will tell. I have a follow up appointment at the end of the month with Dr B. I am sure he will give me some insight as to what will happen.

Top 5 things to take with you to the Hospital

Hospital stay can be very boring. Yes, you're suppose to rest but sometimes even that gets dull and lets face it there is only so much rest you can do in a day. Not to forget the lovely gowns they give and the oh so pretty socks. I never expect to be at a Day Spa but having something that makes your stay comfortable will go a long way in your recovery. It will make you feel better and relaxed. It worked for me.

Now everyone brings a change of clothing and of course your insurance cards. But I think you could also bring a few more things.

Here are my top 5 things to take with you to make your Hospital stay more enjoyable:

1) Robe/PJS- That little hospital gown does not keep you warm at all. Bring a Robe and some PJs to help keep you warm and secure.

2) Entertainment- By that I mean MP3 player, Game Boy, PSP even a portable DVD player. But make sure your Hospital has a safe in the room to store these goodies in. Even in hospitals things go missing. Most rooms have TVs but there can be a cost to activate it. Also grab your favorite Novel or puzzle book. This will help the time go by and keep your mind active.

3) Toiletries- Tooth brush, tooth paste, feminine products, razors, hair brush... you get the idea.

4) Cell phone- If you have one bring it. Great for texting friends on how you're doing and making calls. If you have web access you can check your email. Rooms are all equipped with phones but there is a cost to turn them on.

5) Sneakers/Walking shoes- This should be a given since you are not going to the hospital in heels or dress shoes, unless its in the ER. The socks the Hospital gives to you are fine but don't offer any support. If you want to take a walk around the floor in comfort bring your sneakers.

It really all depends how long your hospital stay may be. Now don't bring a giant suite case, just what you need to get by. The doctors may go over with you what you can or can not bring. They are days when you don't want to or feel good enough to do anything but for the other days some of this stuff can help. Also it helps if you have your own room. Both of my experience have been in a room by myself.

I am Free!

Today I was let go. Nurse came in very early in the afternoon stating I could go home. Which I was glad because I was worried my cats would die of starvation. Well not really as I left two big bowls of food and water. But I get worried for them. They gave me two different types of antibiotics to take. Guess they are covering there basis to make sure I don’t get another infection.

Mom and I went back to the hotel she was staying at. We decided to stay the night as it was well passed check out time. We would leave for home early in the morning. Mom would be driving for the first time back. Usually I would drive but not after this. She did well for a three hours drive. It’s nice to be home.

Oh and my cats were fine.

Can I go home?

It’s Monday and the regular staff working today. Today my new nurse is actually new. It’s her first full day in the hospital after schooling. She had a more experience nurse train her. She was very nice and very hard-working. Makes we wish that all nurses regardless of their years in service would keep that spark. Not to say the nurses here so far were mean or inattentive, on the contrary. But it makes me smile to see her eagerness and sincerity shine.

Moms bored. I am bored. TV is boring. I do have my Sookie Stackhouse Novel to entertain me. I have been texting my friends too. But I am still bored. At least my pain is gone. Its sad when food is my highlight of the day.

I would see Dr B today as he was off during the weekend. I am still swollen but not as bad. I am sure they will see if they can drain any more fluid. Still chatter of taking out the plate. When I did finally see my favorite Doctor he did look puzzled. He is coming to the conclusion that this plate need to come out. I asked when the procedure would be. Today? Tomorrow? No, it will not be till after all this infection is done and I am healed. February? March? Well at least I will have my sick time back since I used it all in the beginning of the year.

Well that tomorrows issued I guess. I just hope I get to go home soon to feed my cats.

Weinberg "Suites"

Home Sweet Home. Ok not quite, but at least I was familiar with my surroundings. Spent my first night at the hospital. As usually the nurses came in and took my blood pressure and temperature. Hooked me up to an IV with fluid and antibiotics. Its weird to try to sleep with an IV sticking out of one arm. I am always afraid I will yank it off some how.

The team of doctors came in around 8am that Sunday. Mom was already here. Poor thing, probably only got a few hours sleep at the hotel. There were murmurs about my issue and about the plate and the infection/swelling that I kept getting. But they went on there way but would be back this after noon to evaluate the pressure. In other words they would be draining the collection of fluid in there. I just hope with a needle and not a knife.

The nurse gave me this thing I needed to blow into to help my breathing or clear up my lungs. I never did understand it the first time I was here. I could never get it above 2000. Oh well.

The good thing this time around is that I was Mobile. I did not have to worry about trying to walk again. So I felt good considering. Plus the drugs did help alleviate any pain that I had. I walked around the entire floor with this giant machine for exercise. Not as easy as you would think as I keep hitting my leg on it. Had to remember to keep it at arms length.

Doctors came back that afternoon and drained my chin. Thankfully with a needle. They took 3 vials of pus out which helped take away the pressure. I almost felt better instantly. Almost. Mom was not there for this event that they did right at my bed. Surprisingly it did not hurt.

Back at Johns Hopkins again

After we checked into a local hotel in Baltimore my mom and I took a taxi to the hospital. I must say I have no idea where the ER is at Johns Hopkins. We got dropped off at the main entrance and walked over to the ER, which was down is some basement level of the hospital. I was really fearful that we would be waiting 6 hours. You hear horror stories about wait time and by the lack of empty seats in the waiting area I worried the my fear would be a realty. I must say getting through the first two triage stations were quick. It was the wait after that was not.

I was so tired from the drive and the stress of it all I almost fell asleep. I would have too except for the fact that two patients that were waiting to be seen almost gotten into a fight. I am not kidding. Security had to come and separate the two like school children. I remember asking the nurse that night what was up with that. She said it happens more then you would think. A lot of people use the ER as their main doctor.

I finally did get called back about 2 1/2 hours of waiting. The nurse took me back, way back under the grounds or basement of the hospital. I felt like I was in this secret area you were not suppose to see. Through different tunnels and doors and one short elevator ride I arrived in a different part of the ER unit. It was a floor of the Olser Building of the hospital where they kept patient most likely to be admitted. Yeah me! It had a specific name but I forget what it was. Not important I guess.

After I got into my hospital gown they gave me some fluid as I was dehydrated, took some blood (which they had a very hard time finding my veins) I knew I would have to get yet another CAT Scan, my 7th in a little over a year, but they wanted me to be well hydrate before they start.

The ENT on call was was same Doctor I talked to on the phone. He examined me and said he was glad I came in. They took a marker and circled around my swelling. This was done to gauge to see if my swelling would get worse. I have a picture here. My poor chin.










I had a roommate. Poor thing keeps saying she was tired and praised Jesus. Though I thought it was interesting that she was cursing up a storm just after the Jesus part. So I keep asking the doctor when I would get my own room. He told me he would be transferring me to the Weinberg Building where I stayed last time when they officially admit me. These rooms are all "suites" so just one bed per room. GOOD!

I was not in ER Unit long. After two full bags of fluid and a trip to the basement to get my Cat Scan my mom and I were taken to the Weinberg Building and my "suite" for the next few days. Felt like coming home. Weird I know.

Mom, I think I need to go to the ER

They say each person knows their body. What feels right. What does not. Well today I woke up not feeling right at all. I did not get any sleep. I am in more pain then I should be IN after surgery this many days out. And my chin is the size of Mt Kilimanjaro not to mention that it is red hot to the touch. I called the ENT on call and told him what happened. He stated that he would call Dr B to see what he wants to do. OK, let me know.

When he returned the call he stated that I need to go to an ER. Preferably Johns Hopkins sine they are familiar with my case. I asked if I could wait till tomorrow. He said it's just going to get worse. OK I will do my best since I live 3 hours away. Sometimes I wished I choose a hospital that was a little closer. When my mom got home I told her. We packed in record time and were on our way by 3:00pm. This should be interesting. My poor chin.

My Big Fat Italian Chin

Went to see the doctor today for the swelling that I had underneath my chin. It seemed to get more red over night. Dr B saw it and was mildly concern since I have a great track record of infections. I told him that I was not given a prescription for antibiotic and just have been rinsing my mouth with saline solution and a medical rinse given my Dr Sinada's office for the implants. He advised me to stated taken antibiotics which he prescribed and to see him in 10 days. He also said if the swelling increased to give him a call ASAP. Don't worry Doc, your on the top of my list.

I also had a appointment to see Dr Sinada for my implants. He was very pleased by the way they looked and took an X-ray of them.
He showed me and I took a quick picture of it. The game plan from here is to let the implants screws settle. In about 3 to 4 months he can then proceed with the next step which is either permanent teeth or a denture like prosthetic that I would be able to remove at night. I asked him for the cost of both as I did not think my insured would cover this. He states this billing department would keep me informed so I can make an educated decision. At this point all bills have been processed under medical.

I went home wearing the temporary prosthetic he gave me last week. He just smoothed them down to help make the fit better. I can start chewing on the right side now but he recommended soft food for now. The only issued I had was swallowing. Ever time I swallowed I would get a sharp pain under my chin. I was not sure if it was the prosthetic acting as a suction and causing the pain or if it was the swelling or both. When I got home I took them out and did not wear them since.
One step at a time. I have to take care of this stupid swelling first. Then I can think about my new fake teeth.

I knew it,

Its been 5 days since my surgery and you guessed it I got an infection. My face is fine one both sides but right under my chin I swelled. You can see the redness on the right side just above where the stitches are. Good thing I am going to the doctors tomorrow. I just hope that he does not have to reopen the stitches. I would hate to have it happen everytime my face swells up. But I know this was going to happen. Heck I got an infection like a million times. I just hope its only because of the surgery and not the plate.

I am out of Surgery

Today I had surgery. Wished I could say it went smooth but... My mom and I got to the hospital around 5:00 am. We went to the Weinberg building where I had my first surgery and the letter I got from Doctor B's office stated that is where I needed to be. To my dismay I was not scheduled there. I was to be at the Outpatient building. I was a little miffed. It's stressful enough the day of surgery I don't need more aggravation. Regardless the nurse was very nice and she apologized 10 times for the mixed up. I told her it was not her fault. But I will let the office know.

When I got called back to the pre-op room I went through the usually bought of questions the the nurse asks: Are you pregnant? What are you allergic to? When did you last eat? etc... I must have been confused as I kept thinking this is not a very private area where they are going to perform the surgery. DUH LAURA its pre op. Dr B came back and told me what he was goig to do: Close the fistula and re buff so to speak my scar around my neck. I did not see Dr S for the implants and wondered if he was even going to be there but I saw this resident Dr R and he reasured me Dr S would be present. Any way they walked me back to the operating room where they stuck this and that to be. Then I was out. I work up about 2 hours later in the recovery room felling awful. I was so out of it and cold. They gave me drugs ease my pain and then took me to station two to get ready to discharge. I was so cold at this point that when my brought my mom back I busted into tears. My mom was like what happened? I told her I was cold and the nurse brought over three warm blanket. Much better.

The nurse went over discharge instructions very quickly? I had to ask her to repeat that like 10 times. She was not very friendly and my mom agreed. Wished I smacked her. But Dr B came back and verbally went over everything as well and Dr R. Now they did not give me any antibiotic since I was about allergic to almost of them and the ones that I am not give me c-diff. I don't think this was a wise choice based on my based record but they did give me an oral rinse. We will see what happens. I am staying at a local hotel in Baltimore before I head back to NJ just in case.

I have two weeks of rest and recover to go through and then back to work. Here is hoping this is all over with.

Its almost time

This week is my surgery date. But I am worried because when I went to Disney last week I got sick. Very sick. Not for Amelo but the common cold. Either I got it on the plane down or by some random kid. The people who worked at Disney said it was going around. Not what I needed one week out before surgery. I was worried the Doctor would cancel my date. Well I would find that out tomorrow.

Doctor looked at me and was pleased the swelling did not come back. Looks like the glue worked and the hole inside my mouth has closed. I could not even tell there was a hole. It healed nicely. He could tell I was sick and was pleased that I came down anyway since to see him. He reassured me that as long as I did not have a fever it was ok. I did not. Just to advised the anesthesiologist that I was sick.

The plate would remain. If this did not work then they would have no other choice. Here is hoping.

I called my Oral surgeon to confirm my appointment for Friday for the Doctor to start the implant process. To my horror I was told the doctor was not in and is out till next week. I was very very very very upset on the phone when I was told of this. Let just say some not so nice words were said. I should know better but hey, I have surgery. My nerves are already raw. His office said they would call and get back to me to see what happened. Long story short the doctor would be in on Friday for just for my surgery. But he was indeed out of the office to everyone else. Don't I feel special. Just wished they said that from the get go before I got mental... oh I mean disheartening.

So there you have it. In a few days I will be back on the surgical table at JH. My third surgery. I know I will just be starting the implant process but I hope that it will be the end of my reconstruction end.

October bliss

I love October. Its my favorite time of year. Leaves change, Halloween, pumpkin ice cream and warm apple cider. I went to see my doctor today and he is now confident that they may not have to take the plate out. He feels that the fistula is what the cause was that caused the swelling and he will seal it up on November 7th. He put some chemicals into the hole in my mouth to make the opening a little wider and place some sort of medical glue through a needle. He did the same to the hole underneath my chin. It was a relief that I don't have to pack my wound anymore, a daily ritual I was glad to get rid of.

My only fear in not having the plate taken out is failure. I don't want to go through the surgery for the implants and the closure of the fistula only to go back in a few months for the plate to be taken out. I figured three surgeries is enough. I did not want a four. But the doctor did not want to go back in and slice my neck again if he did not have too. I guess I understood. But he will be some dermabrassion on my scar to help clean it up.

When will I get my teeth.

It’s been 8 months since my surgery and I had hoped by now that I would have my implants, new teeth and I could start chewing on my right size. New teeth so that every time I smiled my tongue would not stick out on the right side and I would not look like an idiot. But with all my issues I am having that would not be the case. It could not be the case.

I went to see my oral surgeon to tell him what was happening and to see where my implants would fit in, if at all possible. Dr S knew what was going on with the swelling but not the bleeding. I told him that my surgery date would be November 7th and I wondered if he could do the implants then as he once suggested at a prior appointment. He could and would if there were no issues during surgery. At least place the studs in my new jaw and even take out my wisdom teeth on my left side that had to get removed anyway. It would be nice to see if they could do everything at once.

I would not get my permanent teeth just yet. At best he would give me prosthetic teeth (dentures) to go home with that I could place over my studs. This would give me time to see if the placements would be correct for the permanent implants or to see if anything needed to be adjusted.

I just don’t know if my insurance company will cover it…the implants anyway.

I also asked to get a copy of my last x-ray showing my plate. It’s not the best copy but I uploaded it anyway. You can not really see my fibula. Perhaps I can get a better copy. I will upload soon.

Ok, enough...

I love to travel. See new places. Eat new foods. Meet new people. Eat new foods. Ok, so I like food. Anyway, I was about to take a trip to California. It will only be my 2nd time to San Diego and first to Los Angels.

My brother was out there working so I would kill two birds by seeing him then flying out for the San Diego Comic Con. I was all excited except for one thing. I notice the day before that I started to develop what looked like a blister inside my mouth were the graft was. It was quiet large, the size of a raisin. I showed this to my mom and she also could see it. I knew I would have to keep an eye on this. But nothing was stopping me from enjoying my trip.

It took me a while to get adjusted to LA. Not because it was a bad city. It is just... different. I am from the east coast and we don't have a town where I live like it. Guess the warm weather year around helps.

My brother and I were off to go to Disneyland. I was very excited. Been to Disney World several times. Use to work there. Its always a good time. Except for today. As I was packing my wound with gauze I noticed an odd taste in my mouth. It took me a while but then I realized what it was. BLOOD. Oh crap!

I quickly went to a mirror but it was hard to see where the blood was coming from. Upon further examination and by using a q-tip, I noticed it was coming from my blister. Naturally every evil thought I had about the bone graft failing or the infection now spreading crossed my mind. I was worried that I would have to go to the hospital and ruin my vacation. The only hospital I knew was Cedars-Sinai because you here about it on TV all the time. I asked my brother where is was and thankfully it was just down the street from his hotel. I tossed back and forth in my head whether I should go now. The blood was not bad, just dribbles and I really wanted to go to Disney (yes my priorities are wacked). Well you can guess what I decided to do.

Well I had fun in Disney and the bleeding did stop. As soon as I got back from CA I went right to Hopkins to see my doctor. I called his office when I was on vacation and informed his secretary what was happening she he was perpared. After the doctor examined me he said, "Ok enough". He thinks that he finally realized what may have been causing my infection and swelling. The blister means that there is a pin needle size hole in my mouth where they did the surgery. He wants to go in and take out the plate and reseal this hole. He also said that it was same area where they had to go back in 4 days after my first surgery. Great.

I knew this day would come. But I guess part of me was in denial for three months. Guess it was the bleeding that snapped my eyes open. I cannot keep going on like this. Plus I want my teeth, my full smile back and that cannot happen till I get this swelling and bleeding under control. The doctor stated where he would go in, my mouth but warned me that he may need to cut my neck a little to get his tools in there to take out the plate. The incision would be on the same scar line that was the first two and that it would not be a evasive. If everything looks good no new plate would be put in. If not, he would place two small plated where the graft and the my jaw meet. He would also close that pin needle hole at the same time. Surgery would take 3 hours and it would be an outpatient procedure with recovery time about a week.

Naturally I am taking off two weeks to give me time to recover. If I feel up to it I can go back early. I already told my work when the date would be.

November 7th.

Look mom. I can drain myself!

Going to the doctor’s office so many times for the same thing you can get a inkling on how they fix things. Not major surgeries mind you, smaller stuff. Like how to drain your face when you swell up for the 3rd time. 4th if you count the few days after the first surgery. Yes, I did swell but I knew this was coming this time. The whole under my chin closed up… completely.

I knew I had to reopen the hole somehow. So, like I did before but this time on purpose I stuck the back of the q-tip in the closed whole (carefully) and POP, it opened. The junk that came out was not severe but it did do the trick. Over the next few days the swelling was smaller and smaller. By the time I had my appointment with Dr B it was gone. I told him what I did and he almost laughed. You have to laugh at these things because what is the alternative? Cry? I did that already on several occasions.

He did press the issue that I really need to get this plate out. It was up to me when to do it. But if I waited I just have to go thru this thing over and over, the swelling and aggravation of packing the wound and the bleeding that comes with it. Soon I would have enough. But I am going on vacation soon and I don’t want anything to interfere with it.

I need some tranquility. That and I am in denial.

Another two weeks...

It’s amazing throughout this whole process how many highs and lows there are. I have to say right now I am at a low point. Two weeks after my last appointment I started to swell up again, badly.

It has been getting harder and harder to pack the strip inside my wound. I had taken this as a sign that my wound was healing and rightfully so. But I guess the infection inside my jaw thought otherwise. It got so bad that I had to take out my jaw bra and put it on. Obviously I made another appointment with Dr B. I feel like I live there now.

Now I live about 3 hours from the hospital. Since my appointment was at 8 am I decided to stay at a local Baltimore hotel with my mom the night before. We ended up staying at a Marriott Hotel which was very nice and comfortable. It was located right along the inner harbor so the view was very pretty. That, and that fact they had a nice plasma to watch LOST made the stay enjoyable. Too bad I was not feeling that jolly.

The one side of my face right now was pretty big. It got to the point where I could feel the pressure around my eye. I was still trying to pack my wound as best I can. Guess this morning I applied to much pressure because as I packed it I heard a little pop. You can guess what happened next. I must have reopened the wound as trickles of pus started to come out. I covered that up very quickly. Let the doctor take over from here. Gross. :(

Dr B could not understand why I kept swelling. He could see no hole in my mouth where saliva could get in. The x-rays and Cat Scans call came back normal. It must be the plate. He stated sometimes bacteria can attach itself to the plate and he only guessed that could be it. He was hoping my body would fight off the infection by now. All we could do is drain the swelling and wait to see what happens. If this did continue we would have to take the plate out. Another operation. Ugh!

Two Weeks Later

Two weeks later I am back at Johns Hopkins. The drain has been working well. All the junk has come out and collected on the gauze that I had covering it. Quite gross but by this time I am so used to it. The swelling was completely gone and I looked normal. Well, as normal as to be expected after reconstruction. I had a big smile on my face when I saw the doctor. Things looked good.

Dr B took out the drain and replaced it with a sterile strip of gauze. I would have to pack the wound and change this every day and keep the area clean till the hole started to close up. (By packing I mean I would have to insert the strip into the hole as far as it will go with the end of a sterile q-tip.) After that, they would stitch it closed. He gave me the needed supplies and I went on my merry way.

I would see him in another month.

What's wrong now?

It has been about 4 months since my surgery. I have really been feeling better. I just came back from seeing my oral surgeon at Hopkins. He was taking a bite impression to start the process of getting my implants. In a few months I would have a full set of teeth. My spirits were high. My attitude was getting better. I could see the proverbial light at the end of the tunnel. Until two days later, my face decided to swell. Great.

The right side of my face where the doctors did the reconstruction had swollen. I panicked. Is my bone graft failing? Will I have to do the surgery all over again? Fear had taken over. It was time to go back to Hopkins and see my other doctors who did the surgery.

I will say this about the secretaries of both Dr K and Dr B, they really try to work with you. I called both with a desperate sense of dread and I think they could tell by my voice on the phone. I was lucky to get an appointment that day with Dr K and although I did have to wait two days for Dr B I was satisfied.

Upon seeing Dr K and informing him of what I had been through over the last few days, he had come to the conclusion that I was some how allergic to the impression that my oral surgeon did on Monday. He prescribed antibiotics and I went on my merry way. After I got home I starting thinking that it would be odd for me to be allergic to that. I have had the impression done in the past and never had an issue. So I decided to call my oral surgeon to let him know what happened. He stated that swelling could not be possible from the impression. Regardless he stated to go see him on Friday after I see Dr B. Good.

I went to on Friday to see Dr B and he gave me a prescription to get a CAT Scan. Great my 6th one in a year. Anyway, the scan did not show anything other then the collection of fluid that had built up. In other words he had no idea. Regardless the swelling needed to be drained, which lead to another cut underneath my chin. They did this so they could create a hole where all the pus could come out and by this time there was a lot. Gross, I know. Let’s just say I was none to happy about another possible scar.

I broke down. As now I have a hole the size of a dime underneath my chin. The thought of yet another scar, another mark of what this stupid tumor did to me I could not take it. The nurse was trying to be so nice in saying that its will be very small and when its done draining they will close it up nice. I did not want to hear that. All I cared about was I would have another mark.


In the newly formed wound they place a sterile plastic tube which was really just a finger of a plastic glove. They stitched the end of it to my skin so it would not come out. This tube will help drain out the goo that was in my jaw. I will have to go back in a two weeks to see the Dr to make sure things are going well.

After this appointment I went to see Dr S, my oral surgeon. He looking into my mouth and saw the swelling and confirmed that it was not caused by the impression. Obviously no implant procedure can be done till this swelling is under control. I left the hospital felling drained both physically and emotionally. Another scar. More time to wait for my new teeth.

I called my mom when I got into my car. Usually she is by my side when I go to the doctor for follow ups in the past. But I told her not to bother this time. Putting on my brave face I told her what happened.

What will I look like?

Its been just over a month since the 2nd surgery. I am still swollen under my chin and on my right side of my face where the reconstruction took place. I find myself at this point wondering when all the swelling goes down...What will I look like.


With any type of surgery on this magnitude there can be some type of facial deformity. I can already tell that my bite is different. Will my face/new jaw line be bigger or smaller? Will my swelling go down to where I look "normal"? Will I recognize one side of my face and not the other?

I am already waiting with anticipation to see if the paralysis of my lower lip will go away. That is what the Doctor said can take up to 3 months. Well one month gone, two to go. I sometime have trouble talking which might be related to the lip or the fact I am missing 5 teeth. My lip, my speech, my face. Does not bode well for my dating life.

I have never been a huge party person or found the need to go find a man to make me happy. I date but that is not a priority. That was my choice. I find now even if I wanted to, especially if things don't change, what will I look like? Who will want me now?

Yes, out of all the stuff I have been through this is what I worry about. Face it, we live in a society where appearance matters. I know I am lucky. I know it may not be that bad. But that thought is there, in my head. I have to wonder... what will I look like? Will I see me?

And my answer is: I don't know.

I would smile, but I can't

Well, on January 3rd after 14 days, two operations, 42 plus shots and countless other drugs I am home. I find myself very tired and sore. Pain is not too bad but I do have my drugs if needed to combat that. I can finally walk around without a walker. My leg is not even close to being 100%. I will have to go to physical therapy for that. But with time I should be moving around. I have complete numbness in half my face. From the left side of my chin all they way around to my lower right ear. Doctor does not think I will ever get the feeling back. But I guess I could live with it. 5 teeth are gone. Neck is still sore understandably. They did cut in the nature crease of my neck. Looks like someone took a small razor and sliced it from one side to the other. Its hard to move my neck around but its something I have to work on, especially if i want to drive again.

The worst part of the whole thing is that I have limited lip movement. In other words I can not smile or control my lower lip. I feel like Dick Clark. Doctor said it may get better but no guarantees. I can live with the scars and the numbness, but this is too much for me. Since the second surgery on December 24th there has not been one night where I have not cried.

It was a hard thing to go through, still is. I would not wish this on my worst enemy. I pray that no other person has to go through this. I know it could be worst. There were people on my floor who had to go through chemo and radiation. I can not even imagine what they go through. All I can do is deal with the pain, and fear and reality of what I have. And its sucks.

Happy New Year.

12 days. I have been in this hospital for 12 days. Feels much longer that then that. It’s New Years. Spent my second holiday in the hospital. Go me! The good part of where I am staying at the hospital is that I could see the fireworks that took place above Baltimore’s Inner Harbor. Well for the most part as it was on an angle. But they were nice.

My mom stayed at the hospital with me late that night just to see the fireworks. She usually leaves no latter then 9pm to head back to the hotel where she was staying. But the time the fireworks were over she could not get a cab. This in hindsight was a big mistake as there was none available. It was New Years after all. So she ended up sleeping over on the little chair that turns into a couch. Not the most comfortable bed but it will do in a pinch.

When I came into the hospital they did warn me that I would lose some weight. But since I was not having my mouth wired shut I did not think I would lose much. I finally was able to get onto a scale at the hospital and I lost 8 pound. Guess its better then nothing. This did not surprise me since I was eating NOTHING for the first few days and was put on a feeding tube after that. Can not wait till I get this tube out. I want chicken wings.

I can tell that the doctors and staff want me to go home, but I don’t want to go home with drains and if there is an issue I would rather deal with it while I am here and not over 3 hours away. Besides, I would not be able to drive, not yet anyway as I can not turn my head. So I would have to rely on other people to help like my bro.

The doctors did come in today to take off one of the drains in my neck. This is good as I was sick of having these two big balls hanging from my neck. They made me look like I had 4 boobs. Plus it’s so gross when they drain the ball as it fills up with blood and other liquids. Let’s just say it stung when they removed it. What a weird sensation.