Ameloblastoma... Amelo what?

The Gift of Life, Lazarex Cancer Foundation

2011-10-11T00:28:00.001-04:00

Please check out this short film about the Lazarex Cancer Foundation mission to help people no matter of their age or types of cancer.

Disney Halloween 5K

2011-10-02T23:22:00.012-04:00

This weekend I went down to Disney World and participated in the WDW Wine and Dine Family 5k. It was a lot of fun. It was held at the Animal Kingdom park. The same park that I did my 5k race in May. This was all part of my continuing training to get ready for my 1/2 marathon in January. In the spirit of Halloween I did dress up as Minnie Mouse. My race time was ok, coming in at 39:46, about a 12:35 minute mile.

I also had the opportunity to see first hand the Wine and Dine 1/2 marathon event later that evening around EPCOT. Depending on how the Tinker Bell 1/2 marathon goes, I might be running this 1/2 marathon next year. The race did not start till 10:00 pm and since I had to be up at 4am that day for my 5k, I was exhausted. I was watching from about mile marker 12, so the runners only had a little over a mile to go. Some runners were dress up in costume. I think the highlight for me was to see a runner dressed as a giant grape. How he ran in it, I will never know.

You Go Grape!

Hey, anyone seen my fibula?

2011-09-28T20:16:00.011-04:00

Just a quick post today. I have seen countless photos of my jaw over the last few years but this is my first post surgery photo for my leg. You can see how much of my bone was taken out. It is amazing that the bone that was once in my leg is now in my jaw.

So this is what my leg looks like...

5k Run Today

2011-09-25T22:03:00.008-04:00

As part of my ongoing training towards getting ready for my first half marathon, today I participated in a 5K run. It was the Virtua HealthFitness 5K in Voorhees, NJ. The hardest part for me was not so much if I would finish the run. I knew I could as I have been training on this very same course for the last four weeks. For me, it was the time that I would finish.

Using the run-walk method for the last few weeks has allowed me to finish a 3.1 mile course in about 40 minutes and 30 seconds or a 13 minute mile pace. Now that is a wonderful pace for a newbie like me. But when you are surrounded by runners who actually run all out, it can be a little intimidating. Makes me want to run faster and longer than I should for my level. So I have to run with blinders on.

It was fun and I finished at 38:43 or a 12:25 minute pace. A personal best.

Disneyland 1/2 Marathon 2010 Team for Life

2011-09-21T00:20:00.006-04:00

I ran across this video from 2010 on the Lazarex Cancer Foundation YouTube page. Although the song was originally written about breast cancer, you can read about it here, it definitely echoes what I went through with ameloblastoma.

As the song asks, why am I running? Why am I trying to push myself? The answer is simple. It gives me strength. No matter what I have been through, no one will EVER take this away from me. I run for me. I run for life.

Please check out the video below. Watching this video touched me but it also energized me. I can not wait till January.

In need of a little pixie dust...

2011-09-17T01:18:00.019-04:00

About four years ago I started my journey with ameloblastoma. I met some wonderful people along the path. I will truly never forget the positive mark they have left on me.

Each of us has been touched during our lives by a friend or family member who has bravely battled various diseases whether it be heart disease, diabetes, cancer and yes, ameloblastoma. As a result of my experience battling my own disease, I have decided to give back. I have joined the Lazarex Cancer Foundation’s Team for Life.

As part of that team, I will be running my very first half marathon on January 29, 2012. I will be participating in The Tinker Bell 1/2 Marathon at The Disneyland Resort in Anaheim, California. Yes, my very first and yes I am a little scared. I have done 3 mile races in the past but never a 13.1 race. My goal, besides to cross the finish line, is to raise money and YOU CAN HELP! Your contribution is greatly appreciated. No amount is too small.

Lazarex Cancer Foundation builds a bridge to hope, life and dignity for cancer patients by providing financial assistance to defray the cost associated with patient participation in FDA clinical trials. Additionally, they help patients navigate their clinical trial options and provide community education and outreach services.

The money you donate will help Lazarex achieve their mission of providing resources for cancer patients who have been told they have no other options, but who are not yet done with their journey in life and refuse to give up. Lazarex believes that together we can build a bridge to hope for cancer patients.

Mission: To provide resources for cancer patients who’ve been told they have no other options, but who are not yet done with their journey in life and refuse to give up now.

My fundraising goal is $800 by January 5, 2012. Every dollar helps. Your donation will inspire me and help those who need it most.

Please follow this link to visit my personal web page and help me in my efforts to support Lazarex Cancer Foundation

Also you can visit my FACEBOOK page for this event here.

All donations to Lazarex Cancer Foundation are 100% tax-deductible.
Lazarex Cancer Foundation is a 501 (c) (3) non-profit organization

I am done!

2011-09-08T00:42:00.009-04:00

After nearly four years, I can now say I have a full set of teeth. The last phase on my reconstruction is over. I received my bridge. I do have to say it is a weird sensation. I have gotten so used to not having them that I keep forgetting to chew on that side. But when I do, it feels so artificial. Well, lets face it, the teeth are artificial. There is a clear difference between having real teeth and fake ones. I would describe it as if you were wearing a clear retainer or guard that covers the natural teeth and then try to eat with it still in your mouth.

The doctor at Hopkins temporary cemented them in place to make sure I felt comfortable with the new bite. After a three week trial period they were permanently secured in my mouth.

Wish I could 100% enjoy it, but my insurance company, in all it's wisdom, denied to cover the payment of the bridge. I really don't feel like paying 7k so obviously I am fighting it. Again.

So, as of right now, I will only have to make two visits to Hopkins a year. One with my oral surgeon, to make sure my new teeth are still looking good. The other with the Head & Neck Surgeon to make sure my tumor does not come back. This does unfortunately involve yearly CAT Scans.

I can not imagine going through all this again. I don't want too really. I am completely satisfied with my choice in hospitals and I would recommend the staff at Hopkins to anyone. Though at times I do wish the hospital was close to me and that I did not have to drive thru three states to get there.

If you are reading my blog, you or someone you know is going through this "rare" disease. Whether you are in the beginning, middle or end we all have stories to share. I encourage anyone to write a blog or start a journal about this journey. It's good to know you are not alone. Plus, its cheaper than going to a psychiatrist.

I will continue to update my blog, and try to do it more frequently than I have been. I am sorry for that. Life can get in the way of certain things, but really that is no excuse.

My story is not over.

Expedition Everest™Challenge

2011-05-11T22:02:00.000-04:00

This past weekend I had the opportunity to run a 5K race. It was held at Disney's Animal Kingdom® Theme Park. The cool thing about this race is that it is not just a normal 5K. They had various obstacles that you had to go through throughout the course. I ended up finishing the race at 36:10. That was just under a 12 minute mile. Not bad for a girl with only one fibula bone.

I did not have to place any support around my ankle thankfully. All the training I have done over the years since my surgery has made it strong. I did, however, had to tape one of my toes that has curled under as a result from my surgery. As I trained for the race my toenail started to become damaged from running on it. I was afraid my nail would fall right off. I am trying to work on stretching my muscles around that area and hope that, over time, it will be more stable.

Once the 5K race was over, the scavenger hunt began. As I said this was no ordinary event. In the scavenger hunt we would receive a card that had a puzzle that needed to be solved before we could move on to the next location. They were 4 cards or clues in total that, once matched up, would give us the answer to the fifth and final card. This card was needed to cross over the finish line for the whole event. (Though, honestly, they never checked our last card).

The great part about this event was that there was no pressure. People of various ages and running backgrounds could participate. You could even walk it if you wanted too. My teammate and I ran into a mother and daughter team early in the day. As we chatted we found out that the mother, who was about 69 years old, ran her first race in February. It was the Disney's Princess Half Marathon Weekend. (Holy Cow) Bless her. I figured if that was not inspiration, I don't know what is. I am proud of what I and my teammate accomplished that night. 1:05:23 for the whole event. Maybe I will train to run a half marathon.

Maybe.

Been a bit.

2010-12-04T20:23:00.003-05:00

Sorry I have not posted in a while. Life has it's interesting turns. But that is no excuse not to post. The good news is that I got a clear bill of health from my doctor back in August. I just have to go back in about a year or two for follow-up. I have an appointment to get the final stages of my reconstruction done with my doctor so I should have a full set of teeth soon.

Ameloblastoma "Fast Facts"

2010-08-07T03:55:00.004-04:00

After looking up some general information about amelo, I ran across a website called organized wisdom. They listed some facts that I found interesting.

Fast Facts:

* Accounts for 1% of all oral tumors with most patients diagnosed at 30 to 40 years of age.
* Ameloblastomas typically return.
* While malignancy is uncommon, it does occur in some cases.

Would you like one CAT Scan or two?

2010-08-04T10:00:00.004-04:00

I honestly can say I have had about 10 CAT Scans in my life. All of which for ameloblastoma. I have never had an issue getting a CAT Scan done, till now. I asked my doctor's secretary a while back if I had to get the scans done at Hopkins or if I could do it local. She did state I could get it done where I live. Good, I thought at that time, that would save me a 3 hour drive. However, now I find out that the place in which I am trying to get the scan done, South Jersey Radiology, can not do the procedures, at least not in one day.

(?????????)

According to SJR, my prescription states two separate scans. Well that is news to me. I usually get one scan by itself and then another with contrast. I got so mad that I just told the person on the phone to cancel my appointment all together. I felt bad as she was being very nice and I was acting like a wounded bitch. Guess I let my anger get away from me. Again. I then directly call Hopkins and left message a with the secretary asking to help get this all straighten out.

If I have too, I would go to Hopkins but I did not understand why two different procedures were ordered this time. I normally just have one. Also SJR was trying to get a hold of the doctor to find out what the exact order was and no one called them back. If I have to take a day off to get this crap done I will be very miffed.

And it’s only 10am.

Johns Hopkins #1 again

2010-07-15T21:50:00.007-04:00

U.S. News and World Report came out with their annual Honer Roll of top hospitals. Johns Hopkins, the hospital where I had my surgery, ranked at No. 1. It has been at the top spot for the last 20 years.

Congratulations goes out to my surgical team of Dr Kofi Boahene and Dr Wayne Koch.

You can find read more about the article here.

I just want to heal

2010-07-09T21:53:00.007-04:00

Today I received a letter from my insurance company regarding the appeal package I sent last month. I asked them to reconsider payment for the implant surgery I had last November. They denied that request.

The letter stated that this claim was not entitled to an appeal. No explanation, just that fact. It stated they would forward my information to the correct department. WHAT???

I really don't understand insurance companies. The first denial letter stated that I could appeal. But when I go through the appeal process they send a letter stating it's not entitled to be appeal. Talk about a mixed message.

It's a very frustrating position to be in. I just can not seem to heal. Physically, I want to heal and finish with the reconstruction. Emotionally, every letter that I receive rejecting the coverage is heartbreaking. It is almost as if they are rejecting me as a person. As if I do not matter. I know for them it's a business. They want to save money. But where does it end. It's hard to have hope when you have been let down and hurt so many times.

I will call them on Monday to clarify why my request was denied for an appeal. Just another day of my life dealing with amelo. But it's ok. I always keep telling myself it could be worse.

Chin up Laura, chin up.

Closing down shop.

2010-07-04T17:09:00.007-04:00

For a little over a year I hosted a support group at Meetup.com. Although we did not have many meetings, I was glad to talk to others dealing with amelo. Communicating through the internet is great, but that never replaces seeing others face to face. Unfortunately, I do not have time to continue on with the group and give it the attention it really deserves. So I have decided to close down shop.

I have other factors in my life that need my full attention and unfortunately something had to give. I urge anyone who is looking for support to check out the Yahoo! support group.

Always remember that even though this is a rare disease, you are not alone.

The Black Hole

2010-06-25T23:59:00.011-04:00

Black Hole: An object that is so compact that its gravitational force is strong enough to prevent light or anything else from escaping. (Or keeps messages from being received at the Hopkins Dental Office)

I have officially named that office The Black Hole. The doctor never got my message. Humph! That was what I was told after I called the office back today. If this was the first time that happened I could let it go. But this is the zillionth time. Ok, I am exaggerating but you get my point.

The doctor did call me back right away, thankfully. He did apologize for not receiving my message. I was not sure if he looked at my file so I explained why I was calling. He understood but said that we needed to start the next process in getting my implants exposed. He stated that would resolve the issue of the loose cap causing the irritation and bleeding. **blink**

That's it? That's all I get? I don't know what I was expecting but that sure was not it. But I guess he is right in that I need to get a move on with this. I am just flat out scared. I am scared that my insurance company will not pay. I am scared that this dental office in incompetent. I don't know even if I want to deal with them anymore. But it's easier to deal with them then to start over. Not very logical but it's how I feel.

Guess I have some thinking to do.

Just another week

2010-06-15T20:31:00.004-04:00

I called the Hopkins dental office and left a message for Dr. Baer to get back to me. (Yes, I did actuality get someone on the phone.) He was supposed to call me about 2 months ago regarding the issue of bleeding that I have. I said have because it is still bleeding, a little. I get this bubble that comes and goes over the implant that was placed back in November. When it gets full it drips red. Not a lot, but enough for me to be concern. Well, if I was really concern I would have called back about 2 months ago. Guess better late then never.

Also the office manager never got back to me. I want this billing issue taken care of. So, I decided to send an email directly to the customer service department. That seems to be the only way I can get anyone to respond to my requests. If I lived closer I would just walk myself right down there and stand right in front of their desk till I get the answers I needed.

I tried on my prosthetic teeth the other day. They did not fit anymore. I know this would happen due to all the surgery I had. My gum line changed. These fake teeth were given to me back in 2008 but I rarely wear them as it made me talk funny. I did address this to Dr. Sinada at the time and he did say he could adjust them. But I never followed through with it. My error I guess.

As for my leg, I have an idea as to what the issue may be, but I am not 100% sure. I made an appointment with a local doctor to see if my theory pans out. If not, well then I need to see a specialist. It seems lately every time I stretch that leg I get a massive dose of muscle lock. Ouch!

I also called my insurance company to make sure they got my letters of appeal. They did. They stated I would have an answer by July 4th. So, this will be either a happy 4th or a not so happy 4th. Either way, I will going to the boardwalk and treat myself to some cotton candy. Yum.

It’s the little things that make me happy.

It's all about the codes

2010-06-05T12:16:00.009-04:00

I called the dental surgeon office again on Wednesday. Asked for the office manager and was, surprise, surprise, transferred to a general voice-mail. I left a message asking for him to resubmit the claim for payment for the surgery that Dr. Christian did last year. I also stated that my insurance company paid the first set of implants back in 2008 and they should pay for these too. If needed check the codes that the other doctor used and change them. Sometime it is all about the coding with these insurance companies.

I also asked for a call back. Been three days and not a word. Guess I will be making a call on Monday. If that does not work it is back to the customer service department at Hopkins.

The boards on the Yahoo! Group site have been exploding with insurance questions of late. Guess others too are having issues. It is really sad and frustrating. If anyone have not seen the movie Sicko by Michael Moore I highly recommend it. Makes you think. Also makes me hate my insurance company...

Never give up, never surrender! - Galaxy Quest

Family

2010-05-31T10:54:00.006-04:00

I talked a while ago about having a good support system around you. They will be with you no matter what. Family support and love is key. I lost my father a few years ago and I have never been the same. Death in the family changes you. He never had the chance to see me go through amelo. Sometimes I think that was for the best. But I miss him terribly. There is not a day go by when I don't think of him. I still have my mom and brother. Love them dearly. They have been my sounding board out of life and especially dealing with amelo and my life of late.

I have been having pain in my leg where the fibula was taken out. It's not continuous but it is sharp and lasts a few minutes. I am not sure if it's the muscles or nerves shifting. But regardless it does not feel right. My mouth has also been bleeding a little lately. I am not sure if it is the implant that has a loose cap or something new. I feel at a loss because I do not know how to proceed. My insurance company still have not paid and I don't want to accrue up thousands of dollars without some safety net.

I talked to my brother yesterday in detail about this and other stuff going on in my life. I miss him too. He use to live near me but now he is millions of miles away. God forbid anything ever happens to my mom, I think I would move out there with him. Only issue that would concern me with that is my doctors are all on the east coast. He is on the west coast. I am still dealing with amelo and the insurance crap that goes with it. Lets just say plane tickets would not be cheap. Well, I hope that decision does not have to be made any time soon.

Priority of Life

2010-05-28T22:19:00.014-04:00

We all have them. Whether it is taking care of a parent or child. Staying late at work one day to make sure whatever files get done. Walking the dog, feeding the cat. The list could go on and on. But the one priority that is often overlooked by people, including myself, should be our first priority. That is yourself.

I have to figure out me. What I want out of life. You know that big stuff. LOL. Work is ok but I have to be honest with myself. This is not where I want to be and I am at a dead end anyway. I am taking a nutrition class to see if that is possibly a career change I want to make. Jury is still out on that one. I was suppose to do work on it tonight but I am just not in the mood. If I decide at the end of this semester it's not for me, I think I will take another class in the different field. Get my feet wet and go from there. Things need to change and no one is going to do it for me. Sometimes you have to fight and struggle a bit for what you want out of life. That is how you learn and hopefully grow.

Speaking of fighting, I also need to get my insurance to pay for my implants. But I will have to wait and see on that part. This too is also a priority and moving forward with the rest of my reconstruction. It has been too long and I would like to be "whole" for Christmas. I don't think that is too much to ask for.

I go back in August to get another scan to make sure everything it ok. Fingers crossed.

Still Flighting

2010-05-24T21:29:00.002-04:00

I sent off yet another letter to my insurance for them to pay for my implants. They send my doctor a denial, again. I really should say I sent them a package. I mailed photos of X-rays and CAT Scans of my jaw and picture of me all swollen. I send them so much information that they will think I am crazy. GOOD. Hope they do so they can pay for me to be whole again.

It has been just over a year since my last surgery. All I have to do is get the implants but I do not want to go to the next step until I get this straight. I hate to say this but if it does not work I might have to get a lawyer. I would rather not as the lawyer might be as much as the implants would cost me. But they want me to give up. I say no way!

On the plus side, I have started taking a nutrition class. Should be fun to learn something again in a class environment.

Trust

2010-03-14T23:41:00.007-04:00

Trust: a : assured reliance on the character, ability, strength, or truth of someone or something b : one in which confidence is placed. per Merriam-Webster

To have one's trust is a very powerful gift and one that should not be taken lightly. Once it's lost it is hard to get back. Not impossible, depending on the issue at hand, of course. It is easier to trust close family members like a parent or brother or sister. Heck, they have been with you since you were born.

Friends take time and if you are lucky to have one or two best friends to share your life and trust with, consider yourself blessed. Too many people out there will turn around and habitually reveal personal or sensational facts about others. We all know people like that.

It's very hard to trust a stranger. Let alone, a stranger that will be operating on you. In a way, depending on the operation, you are trusting him or her with your life. That is why, in my humble opinion, if you are going to have an operation, however long or short it may be, get a second opinion. Heck get three or four. I had four listed but only saw three. I did not need to after I went to Hopkins. Sometimes you just have a feeling about someone.

I have no regrets about my choice. For those going through the same thing as myself, I am sorry, it sucks, I know. But look around. Talk to a few doctors. Some may suggest the same procedure, others may pick a completely different path. Two of the three doctors I went to wanted to wire my jaw closed. Two of the three doctors wanted to use a bone graft from my hip instead of my fibula.

Do the research. Get the doctors CV. Talk to past patients if you can. Check out support groups or blogs like mine. But, in the end, its all about trust. Trust in yourself for making the choice and trust in the doctor.

Life

2010-03-08T22:26:00.009-05:00

There are things in life that are unavoidable. Paying taxes, death and change. Sometimes change can be the hardest. Dealing with amelo has definitely changed me. But I honestly feel for the better. Yes, I said for the better.

Let me explain.

I always wanted to get in shape. I joined the gym. Never went. I read up on health magazines. Never followed it through. Get the point. It was only after I had my surgery for amelo that it finally kicked in. I needed to get healthy. I needed to get fit.

I went on an ongoing life change. I went to a nutritionist. I seriously hit the gym several times a week. I mentally and physically made a change to get myself healthy. As a result, I lost 40 pounds. More importantly I kept it off. I really felt better about myself. Sometimes it takes something bad to happen in your life for you to realize what is important. Health is import. I am important. I need to take care of me.

But sometimes change can hurt. Especially if the change was a choice. A choice that was made in fear or haste. Quitting a job. Not going to the doctor. Turning your back on something that could possibly be good because you're scared. Get the picture? Sometimes in life no matter how hard you try and hit ctrl z, you cannot undo it.

If I learned anything this past weekend it is to think before you act. You cannot take back yesterday.

But you can learn.

Last straw.

2010-03-02T22:08:00.004-05:00

I consider myself a very patient person. But there is only so much I can take. After leaving 3 messages at the Dental Surgery office at Hopkins and not hearing back from anyone, I wrote an e-mail to the patient relations office to make a formal complaint. I was trying to get them to help me with an insurance issue.

I was pleased that I did got a response from the patient relations office within 1 business day of my initial e-mail. I got a phone call back from the Dental Office today.

Lesson of the day: Sometimes it pays to complain.

Where is the snow??

2010-02-25T21:40:00.004-05:00

I woke up this morning to no snow. Oh well, at least I got to stay at a nice hotel. After a great breakfast I drove to Hopkins. I met Dr Koch who said everything looked good inside my mouth. I showed him the small bump I had on the side of my jaw. I was not prepared for what he said next.

Pleomorphic Adenoma, also called benign mixed tumor. WHAT THE FRAK?

This was just a possibility as it could also be a cyst and with out a CAT Scan he would not know for sure. He did not want to do a scan due to the fact it was too soon since my last one. He wanted to see me back in August to see if it lump has grown.

Now that I am in a happy mood, (sarcasim) I left the doctors office and started to head back home. Of course now it starts snowing.

I got this from emedicine.medscape.com

Pleomorphic adenomas, commonly called a benign mixed tumor, are histologically composed of 2 subtypes of cells: epithelial and mesenchymal. The tumors are typically well demarcated from the surrounding tissue by a fibrous capsule, which varies both in thickness and completeness.4

Don't know the above means but I do not like it. I really wish they speak english on these medical sites. Someone should start a medial site for dummies.

Guess I will find out in six months.

Let it snow

2010-02-24T00:56:00.004-05:00

If it is possible to be anti-snow right now, place me in that category. Here in New Jersey over the last few months it has snowed. ALOT. We usually don't get too much where I live but this winter has been unusual. I don't like driving in weather like that. Lucky me it was suppose to snow the day I headed down to Hopkins. So, I decided to book a room at my favorite hotel the night before at The Marriott Waterfront.

A wonderful doctor

2010-02-21T18:41:00.004-05:00

I ran across this article I found in Hopkins Medicine Magazine. In the article, it describes the journey of three doctors and the path they took to work at Hopkins. Dr. Kofi Boahene is listed as one of them. He is the doctor that did the reconstruction on my mandible at Hopkins. I encourage everyone to check out the link above. Below is a little excerpt from the article. If anyone is looking for a great doctor for reconstruction, I can not recommend him highly enough. Also here is a YouTube link with a video interview with Dr Boahene.

Yet soon after arriving in Krasnodar and settling into his studies, the two school officials summoned him to the ambulance. Within an hour, a very confused Boahene found himself in a remote medical facility in a small Soviet town, serving as an unhappy pincushion for a dreary parade of nurses who began a daily ritual of blood drawings.

Despite his continuing bids for an explanation, no one seemed able to communicate in a language he could understand. The seemingly unbounded hours and days grew into an agonizing uncertainty. How long would he remain in this limbo? Was this the end of the road? With no end in sight after that first week, Boahene became increasingly uncooperative, eventually demanding to be sent back to Ghana.

I see red

2010-02-20T18:23:00.001-05:00

I woke up this morning and took a look at the inside of my mouth. This has been part of my morning ritual since the swelling occurred over a week ago. I noticed that now a little bubble had popped up right on top where the indentation was from the first drainage. I applied some pressure on it to see if anything was coming out. Let’s just say I was now seeing lots of red.

I am scheduled to see Doctor Koch next week. I think I can hold out till then. I don’t see any yellow stuff which is good. That would be a sure sign of infection. All I can do now is keep the area as clean as possible.

On a side note I am waiting for my insurance to review my appeal letter that I sent a few weeks ago regarding the denial of my last surgery I had for the continuations of reconstructing my jaw. This is the 3rd letter I had to send them. One would think they would get it by now. Guess they are trying to save money. Yeah, well so am I.

Evil Traffic

2010-02-16T18:15:00.000-05:00

Of all the days to head 3 hours south, I end up in a snow storm. Well a small one, but still. It took me about 4 hours to get to Hopkins The delay was mainly trying to get on 295 South. Turns out there was an over-turned tractor trailer. When I finally got to my second home (Hopkins) I ended up being 20 minutes late for my appointment. Thankfully they took me. Hopkins has a 15 minute rule. After that, they do not have to take you. It would be up to the doctor’s discretion.

When I saw Dr. Boahene, I gave him a little hug. In away, I feel like we both have been through so much together. Ok, mainly me as I am the one who got me neck sliced open 4 times, but I digress. I showed him my concern regarding the swelling. But he reassured me that it was superficial and that at this point there did not seem to be anything to worry about. He advised me to keep an eye on it and if it gets worse, to let him know. I also showed him the small bump I have on the side of my new mandible. He stated it appears to be a small cyst or lymphoid. It would not be amelo because that develops in the jaw itself. This bump feels to be on the side of the jaw. I asked if I should get a CAT Scan, but he said that would be up to Dr Koch. I see him next week.

I took my time heading back home.

Another one bites the dust

2010-02-15T21:37:00.002-05:00

Well, it may have happened again. I noticed over the weekend that the inside of my mouth seemed a little swollen. By the end of the day Sunday I know I had a little infection. Oh boy.

I called Hopkins to make a follow up appointment with Dr Christian since he did the implant surgery. Turns out he is no longer at Hopkins . (WHAT!) I asked the person on the phone who took his files over. I was given the new doctors name but was informed he did not have any appointments till April. (NICE… really nice.) “So, what do I do if I have an emergency?” I asked. In which I was told to call his private practice. (Great customers service guys.) I took his number just in case but in my mind I was done, done with that office. I wanted nothing more to do with them. They have had poor customer service since day one. Now, I must stress I have had no issues with the doctors themselves. It’s the office that is so poorly run. I am confident that if US News and World Report just surveyed Hopkins on that office alone, they would not be anywhere near the top list of Hospitals in America.

So, I did what I normally would do. I contacted Dr. B. I have an appointment tomorrow. Perhaps I will get an answer on the other issue I have on the side of my jaw too. I am sure he will want a CAT Scan with contrast. (On a side note, I do wonder if there is a limit on how many CAT Scans a person can have in their lifetime when enough would be enough. I mean this will be my 8th. I think.)

Not much

2010-02-03T23:00:00.003-05:00

I really do not have much to report. I have filed an appeal, my third with my health-care provider. I hope to get a positive response on the payments of my implants. I do have my next appointment scheduled in March with my doctors at Hopkins. I only assume I will have another CAT Scan to make sure "it" did not come back. I tired to remember how many scans I have had to date. 7 or 8. Man, I should be glowing by now.

Elizabeth Haddon 5k

2010-01-08T17:50:00.000-05:00

Found my next challenge. It's the Elizabeth Haddon 5k. It takes place on Saturday, May 15 in Haddonfield, NJ. I have been talking to my trainer about the possibility of doing another run. She thought it would be great. Besides, it gives me something to look forward too and challenge myself both physically and emotionally.

I am not the fastest runner out there but if I can beat my last race, even by a minute I will be happy. The area is pretty flat, so there will not be any major hurtles like the last race. (Giant hill from hell.)

It's a good event. According to the site it helps raise money for charities that are committed to research of various childhood illnesses. Check the link above for more information.

Spam not wanted!

2010-01-05T17:17:00.000-05:00

It's a shame that one or two people have to ruin it for the rest of us. Anyway, I have noticed that over the last few months some anonymous users were posting links in the comment sections. Sorry this is not an advertisement blog. That is not what the comment section is for and, well they know it.

As a result I am restricting the comment section to registered users only. I hope that will fix the problem. If not, well I will deal with that later.

Happy New Year!!!

2010-01-01T00:01:00.000-05:00

Well, just that Happy New Year. LOL

Denied, again

2009-11-30T22:32:00.002-05:00

Today I received a nice letter from UnitedHealthcare again denying my implant surgery. They stated the usually that is it not covered because ...blah blah blah. I think this will be the 4th letter I send to this company and I am really getting sick of this. I know it's their "job" to save the company money but come on.

On the plus side I have not gotten an infection from the implant surgery. That's a good thing. :)

Giving thanks.

2009-11-26T03:10:00.002-05:00

Well, Happy Thanksgiving. This is the time where one should be giving thanks for what you have. I have semi good health. Semi part being amelo but I will talk about that later. I am thankful for my family. My brother and mother who I love to pieces. I am thankful for the support I have from my boyfriend and friends.

But I also reflect on what I have lost. 4 years ago almost to this day, I lost my father to a heart attack. I watched it happen right in front of me and it truly affected me emotionally. So it makes it hard around this time a year to be truly happy. I miss him.

I also think of amelo. It will be 2 years next month since my first surgery. I am thankful it was not cancer. I am thankful for the outcome of the surgery. I am REALLY thankful that it has not come back. But I am also tired. Tired of the doctor appointments. Tired of the CT Scans, X-Rays and MRIs. Tired of traveling 6 hours to Baltimore and back.

It is a mixed bag. But most of the human race has this in some form or another. I know it could always be worse. And for that I am truly thankful for what I have.

CT- Scan

2009-11-21T17:00:00.008-05:00

In January 2009 I went to see my doctor at his private practice. He had this machine that Hopkins did not have. It basically captures a panoramic CT-Scan image. I just recently acquired a copy and wanted to show this. The images were done before they removed the plate.

Here you can see a scan of what my left side of my jaw looks like. You can also see the nail placed into my chin to hold the end of the plate in place.

Here you see the right side of my jaw. You can clearly see the plate and the fibula bone underneath it. It's amazing how small it is compared to my normal side.

Yes, antibiotics taste like crap

2009-11-12T23:16:00.009-05:00

I got to the doctors office with 15 minutes to spare. Only a few people were waiting so I had my choice of seats. There was this one older guy sitting behind me, dead to the world. He was fast asleep and snoring-up the office. It was funny at first but it started to get on my nerves. I wanted to poke him in the leg and say, "wake up." Thankfully, he did so on his own. To tell you the truth I think he woke himself up.

I got called back to the operating room at 1pm on the dot. Very efficient. The assistant asked if I was there for just a routine check up. "Errrr....Nooooo. I am getting an implant done." I got scared for a second. Was there a mix up? But to my relief the doctor came in and asked if I was ready to get the implants done. Implants, as in plural. I hoped that they would be able to replace both implants that were taken out but I was not sure if that was possible.

Before the doctor got started with the procedure he handed me a tray with two pills on it. Antibiotics. What! He wanted me to take them to ward off getting an infection. Guess he knows my track record since I get an infection at a drop of a hat. The worst part about this was I can not swallow pills. I had to... chew them. GROSS! No, the doctor did not tell me to chew them, I can not swallow pills. It's a mental thing I mentioned on a prior posting. Believe me, they taste worse then you can imagine. I almost gagged from it. I had to rinse my mouth out with mouthwash to get rid of that taste.

The doctor came back and went over with me what he was going to do. I was ready as I was going to be. So I leaned back against the seat. He, in turn, brought out a big needle.

Here we go.

An anxiety attack... Really?

2009-11-12T18:54:00.012-05:00

Today is the day. Today I get my implants replaced. Mom and I stopped by Starbucks to get my coffee fix, (Chai Latte, yum.) We left early and traffic was good so we hit the White Marsh Mall for a little shopping. We usually do this afterwards but I was not sure how I would feel after the procedure.

When we got to the hospital we had a little time on our hands so we headed for the gift shop. On the way we went passed the flower store. They had their Christmas decorations up already. What caught me off guard was not the decorations being up so soon. (It was, I mean come on, it's not even Thanksgiving yet.) It was the fact that I had little anxiety attack.

On December 24th, 2007 I had my second surgery, which to be honest was not a pleasant one. My mom got me a little Christmas tree and some flowers then too. Seeing the flower decorations today brought it all back like I was living that day all over again. I blogged about it and you can read it here. I was taken back as I have been back to this shop countless of other times, even around this time of year. Never an issue. Guess it's funny how the mind works.

Mom did not see my face and I am glad for it. I am sure I looked like a deer caught in the headlights of a car. The sudden surge of fear only lasted for about 5 seconds. Then... it was over.

Weird.

Almost Time

2009-11-10T19:40:00.004-05:00

Two days and counting. I am starting to get a little excited as I always do before surgery even though this is minor in comparison to my past ones. So it should be a walk in the park. Should be.

My appointment is for 1pm, so I will leave my home in the morning. Traffic is hit or miss. But I always give myself some cushion, time wise. You just never know, especially in the Baltimore area.

I called the doctors office today to go over what I may need for my upcoming procedure. As expected I got their voice mail. I did leave a message and was pleased to hear back from them in a reasonable amount of time. Usually they take days. I was told that for the procedure I would not have to be put under. They would give me local anesthesia. So I could “drive home” afterward. Personally I don’t know how I can drive home after something like this since my drive is about 3 hours but I guess time will tell. Mom is coming with me so that will be a comfort. Well, to a point as she does not drive at night.

Guess there is always the Marriott Waterfront Hotel. Really, it’s a nice hotel and I highly recommend it.

In one week, back to Hopkins

2009-11-06T01:44:00.003-05:00

Next Thursday I will go back to Hopkins to replace the one implant that they took out in the last surgery. I finally feel that things are moving forward, which is good. But for some odd reason, I feel worried.

I think I feel this way as it has been such a crazy process. From the infections, to the implants being taken out, to the doctor leaving, every step forward seems to be a few steps back. I hope nothing will go wrong and I am thinking positive, but …

The good thing is that I did find Dr. S, (HAZZAH), who will do my prosthetics. He recommended going back to Hopkins to get the implant replacement done and then we would take it from there. I will have to wait 2 -3 months for my mouth to heal and then we can proceed with putting “caps” on top of the implants. Then I would have to wait another few months before they can do the cast of my mouth and then….. TEETH! So, I will not get my teeth for Christmas as I hoped but if all goes well I will get my teeth for July.

Whether the insurance company will pay for it I have no idea, but I will deal with that when it comes up. Thankfully, to date they have paid everything. I could not visualize going through this process without some sort of insurance to help. I really feel for the people who do not have insurance. I am luck in the respect.

So here is hoping all goes according to plan. Fingers crossed.

I did it!

2009-09-27T16:19:00.005-04:00

Today, I ran my first 5k. I ran it at 35.07. Not bad for a girl with one fibula. This is such an accomplishment for me. A year and a half ago I could not walk. I was very happy that my ankle did not hurt. I was worried about that as I would get pain every now and then. Guess my mind was focusing on the race and just finishing it. At least that is what I told myself. So for anyone who had a Fibular Free Flap Reconstruction and think that they will never be able to run again (or in my case, start) rest assured you can. It just takes time.

I don't know if I will continue to run races, but I must say after I was, I felt great. Tired, but great. At the very least I can run two miles to keep up the endurance. Maybe I will try biking next.

Baltimore and hope

2009-09-03T22:32:00.005-04:00

I just had my 6 month check-up with my doctors at Hopkins. I meet with Dr B who did the reconstruction part. He was very pleased to see me, mainly because I had no issues. He did notice that my scar was still red. He said to give it 6 months and after that if it is still red he can do microdermabrasion treatment on it. My insurance will not pay of course. (What else is new)

He also said that my right side is a little thinner then my left. This he can correct with three different treatments.

1> fat injections from my hips or thighs. This would be permanent and note very invasive.
2> Fillers. Also non invasive but not permanent. I would have to get it done every year.
3> Surgery.

Well you know which one I will take. Number 1 please. He states I can have this done at any time and do not have to wait. I think I will do ahead with it sometime next year after the holidays.

I later meet Dr K, who did an examination. He was not too please with scar that was left from my last surgery but said other then that thins seem fine. I will have to see him again in 6 months as a follow up.

So all seems to be going well. Have my little happy face on now.

I am going to run a 5K

2009-08-12T21:10:00.003-04:00

There it is. The girl with only one fibula bone will run her very first 5k in September. I never thought I would do this, EVER. Even before the surgery I thought people were crazy to do this. Walking I could handle, but running?

For the last 2 years I have been working with a trainer at my local gym just to build up strength and be more active and fit. Shame it had to take me getting amelo to wake up to the importance of getting more active. I told my trainer when I started that my goal was to run well enough that I could get away from a robber. My leg was very weak after the surgery where I could not run 5 steps let alone 5k. But now thankfully the strength in my left leg is much better. It's still not 100% nor do I think it will ever be. At least I can run 3 miles, not on a track but on a treadmill. It's a little different when you are out in the open.

Tomorrow I will be heading out to the 5k course and run it for the first time for practice. I don't expect to finish the run in any record time. I am sure it will take me 1 hour or more. But I will take my time and at least finish it. To me after all of this, that will be such a great accomplishment. I just hope I don't pass out. :)

Cursed!

2009-06-16T22:10:00.004-04:00

I firmly believe that I am cursed. A lot of negative stuff has been happening over the last few weeks. About 3 weeks ago I started to feel light headed, nauseous and ill. After going to the doctor she diagnoses me with Vertigo. (BS). I am sorry but I know my body and that is not it. A week later I almost passed out at work. I was taken to the ER, who also said I had Vertigo. (Again, BS). Long story short I have to make am appointment with a neurologist. But I wonder if this is related to the graft? Could it be failing? Perhaps I am worrying about nothing but I just can not help it. It’s always in the back of my mind.

The 2nd is not really related to amelo but it goes along with the curse feeling. I was taking a glass cup out of the kitchen cabinet when the glass next to it fell off the shelf. It crashed onto the kitchen counter, where I had other glass cups and shattered. A giant piece of glass bounced off the counter and landed right on my barefoot. Needless to say there was lots of blood and another trip to the ER. Hour later and 6 stitches I was home. UGH

The 3rd is a direct link to my recovery of amelo. I had an appointment next week to see Dr Sinada at Hopkins for my implants surgery. But when I called to reschedule I found out he is gone. WHAT? I was told that he left about 3 weeks ago. Why was I not informed? I mean I would have traveled 3 hours to see him. When were they going to tell me, when I got there? I was mad. I understand people do not stay in one job forever, but still. Now I have to start over. That is what frustrates me more. Dr S knew everything about me. He has been with me since day one of this whole process. It's just draining. Plus I will miss him.

Anything else the universe can throw at me?

Support

2009-06-12T22:03:00.002-04:00

Life can be daunting at times. It can get especially disheartening when you deal with a disease such as amelo. You can feel so alone. Friends and family do not know what you go through. Not really. They will not know (and I hope never) what it is like to have ½ your jaw taken out or part of your fibula or hip bone gone. The worry that you might be deformed (depressing I know). But what they can do is offer support. A shoulder, an ear. They can tell you to stop your complaining when you go off the deep end for something so stupid. (Thanks bro!)

But what if you don’t have that support system… I recently heard a story and I really hope it was exaggerated. This woman, we will call her Mary, was just diagnosed with cancer. Now instead of her friends being there for her, they abandoned her. She took it as they did not know how to deal with her having cancer. But regardless, you do not abandon a friend in need. Especially one going through something so serious. Lucky she found some support in a fellow cancer survivor. Bless her.

So I say to all my true friends out there, thank you for being there for me. To the rest? Go Frak off!

Insurance Issues

2009-05-10T13:46:00.009-04:00

Insurance companies are such a pain in the butt. Period. In 2007, the very first surgery, my health care provider denied payment on part of my surgery. The reconstruction part. They sighted that they only pay for jaw surgery due to cancer or acute traumatic event. Well having a tumor the size of an iPod nano aggressively growing in your jaw and eating away the bone is traumatic. The invoice... $4,500 dollars. Regardless, I had the doctor write a letter of necessity and I filed an appeal. I was pleased with the out come as the insurance company decided to pay. GOOD

Fast forward to November 2008. 3rd surgery to remove infection and place the implants and continue with reconstruction surgery. My insurance came back and denied that too, sighting the same thing. The bill... almost $10,000. After yet another letter and an appeal I got the happy news that they would pay. Thank you!

Now after two weeks from getting that letter, I got a summery of charges to date stating that I owe that same amount they just said they would pay!! WHAT? Either the left hand does not know what the right hand is doing or they changed their minds. I figured if they did change their minds I would get another letter stating such.

Surgery is so stressful. This last 2 years have been crazy. Now I have to battle it out with the insurance company. UGH! I can not say I was not warned. Over at the Yahoo! Support Group I would hear stories about such things. How they have to keep appealing and "fighting the system". It's just not fair.

Snow White vs Evil Queen

2009-04-30T22:37:00.013-04:00

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

2009-04-16T09:43:00.012-04:00

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

2009-04-13T15:24:00.000-04:00

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.

2009-04-10T16:27:00.004-04:00

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

2009-04-09T15:00:00.005-04:00

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...

2009-04-08T07:52:00.003-04:00

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?

2009-04-06T23:30:00.002-04:00

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

2009-04-06T08:40:00.002-04:00

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

2009-04-03T11:52:00.003-04:00

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!

Hey! Where is the other implant?

2009-03-31T16:05:00.003-04:00

Today was a big day for me. I went back down to Johns Hopkins to see my doctors for follow up. The first appointment was with Dr B, my plastic surgeon. We have a running joke between each other. He never knows what to expect when he opens the door to the patients waiting room. (Will I swell? Will I be fine?) So, he opens the door very slowly and peeks his head in. It always makes me laugh. I always tell him that I love seeing him but not this much. Anyway, after the examination he gave me a clean bill of health. No issues to report inside my mouth. I did bring up again the lack of lip movement on the right. It has gotten a little better over the past 1 1/2 months. He stated that was a good sign. Give it time. He also brought up again that if I am not happy with how I look cosmetically that he can help me with that. But that would be in the future. Now I don't have to see him for another 6 months. HUZZAH!

I then went to see Dr R. He is on the oral surgeon team. I normally see Dr S. but he was not in that day. Today, in what I thought was just a follow up appointment turned out to be much more. He informed me that he would be making an incision over the implant fixture or screw that were implanted back in November and place the dental abutment or studs over them. This would make me one step closer to getting my new teeth. Now I knew I lost one implant when Dr B took out the titanium plate last month. Fine, no problem as I have three left. Or so I thought. After the Doctor put in the first stud, he had a hard time finding the other two. He had me take a panoramic x-ray. (Why did he not do this before hand was beyond me.) Upon examination of the x-ray he made two very interesting discoveries. The first was that bone had grown over one of my implants. Bone? This implant was the closest to my original jaw. Guess my bone did not like that there was a whole in new bone and decided to cover it up? Crazy, but that was the easy part. The hard part was the second discover. There was no other implant. WHAT?

As you can see from the x-ray there are only two implants. One to the left you can see the stud over the implant screw. To the right there is the screw that is covered with what looks to be bone. No other implant screw. Where did the other one go? Could Dr B not know he took out two screws or did it just slip his mind? Regardless, I can not get my implants done. Doctor said that he would need to place another implant screw in. So that would require more oral surgery. Great, it would be the 5th in over a year. He stitches me up taking out the stud that was placed in the back screw, worrying that it would get an infection, good idea with my track record. He stitched me up and gave me pain killers and antibiotics. So all this was for nothing. Again I ask myself why did you not take the stupid x-ray before hand. Whatever.

I will be talking to Dr S, my regular doctor tomorrow to go over this. I need to understand what happened. So, as you can understand, I was very pissed. Not to forget I was now in pain. So help me if I get an infection.

One month mark

2009-03-16T00:00:00.004-04:00

Today it will be one month since I had my surgery. No swelling. Which is always good. However, I noticed a small red "bubble" in the back of my right jaw. I placed a q-tip gently on top of it and pressed down. I noticed that there was a little blood on it. Not a lot where I would be calling the ENT at Hopkins, but enough to make sure I tell my doctor in two weeks about it. My luck is that I am getting another infection. GREAT

Also there had been no improvement with the right side of my lip. It is still paralyzed. Feel like a stoke victim. I know the doctor said give it about 3 months but still. I don't like the way it looks when I smile. I don't like the way my lip moves, or lack of movement, when I talk. And I really don't like what happens when I try to drink anything. Lets just say I get more on my shirt then in my mouth. I have to either hold the right side of my mouth closed when I drink to prevent leaking or drink through a straw. God I hopes this gets better.

Scar treatment is still on going. Its only been a week so I am not really thinking about it too much. Mederma is making so much money on me. All these scar creams are not cheap.

Others dealing with Amelo

2009-03-11T01:05:00.002-04:00

For the past year and 1/2 that I have been dealing with Amelo I have talked with some wonderful people online. Sadly they too have been dealing with the same thing. I have said before that I am thankful for sites out there that offer support such as the one on Yahoo!. I also think it’s wonderful for those who wish to share their experience dealing with such a disease. But that’s what this and other blogs are there for, help others. Besides, it is good therapy for the writer. Believe me, I need it.

Below on the right hand side I posted links to 5 different blogs. I encourage you to check out their story.

Scar treatment, week one

2009-03-09T00:17:00.001-04:00

Today I start my scar treatment. I know in time it will fade but right now it looks like a bright red line drawn right across my neck. Doc said I could use any scar treatment out there. I will start with Mederma with sunscreen and vitamin E.
I am not a fan of the regular Mederma as it itches like heck and gets all flaky. Perhaps a combo of E and the cream will help. Says it takes about 8 weeks to work.

We will see. If all else fails I can always switch to a different product.

Just for Fun

2009-03-06T00:11:00.001-05:00

Stupid Amelo

2009-03-04T23:37:00.001-05:00

It is hard not to look into the mirror and see the side effects of Amelo. At little over two weeks since my surgery the swelling is minimal now. Only at a side profile can you really tell I am swollen. But what no one can fail to notice is the bright red scar that goes from one side of my neck to the other. Almost looks like someone tried to strangle me with a piano wire. (I watch too much TV). Monday I will start my scar treatment with Mederma or Scarfade, per doctors orders. That said my scar really does not bother me. What does concern me is the weakness of my lower lip, specifically my right side. It does not move. Not like it use too. When I smile its very crooked and one sided. Doctor said give it time. Anytime when you cut around nerves or stretch out the area it take a few months for it to go back to normal. A similar thing happened last time when I first got the reconstruction. It did take 3 months for the lip muscles to resume the normal function. But they are no guarantees that it will come back. That is what scares me.

I know I can not dwell on matters that are out of my control. I can not feel overly sorry for myself. (OK, maybe a little). But I find myself back in the same position I was when I wrote about it on Friday, January 4, 2008 from my first operation. I would smile, but I can't.

Stupid Amelo!

The one week mark

2009-02-23T13:18:00.001-05:00

Things seems to be doing good. Swelling is still there but I no longer look like a one sided 1/2 inflated balloon. I am approaching the "crucial" time where the last two surgery's the infection reared its ugly head. So time will tell.

I think what may be helping me is the liquid antibiotics I am taking. Last time they (the hospital) gave me pills which I had a hard time taking. I would have to crush them up and take them with applesauce or yogurt. Let me tell you no matter what you put it in they taste terrible. BLAH.

Tomorrow I head back to Hopkins to have my stitches in my neck taken out. The stitches in my mouth will degrade over time. I am still not sure if I will use Mederma or ScarFade. The one things I like is that Mederma has cream with SPF 30. Sun screen is key in the fading of scars as with sun exposure you risk that scar turning red or staying red. At least so I am told.

Rare Disease Day 2009

2009-02-21T00:10:00.001-05:00

Just a reminder that Rare Disease Day is one week away.

Its over... I hope

2009-02-18T12:36:00.001-05:00

I am home. The last few days seems to have come and gone so quickly. I was only in the hospital for a few days. I am not really in too much pain. Just very sore. The doctor gave me a liquid antibiotic so I can take it much better then a pill. I can not chew anything hard. A soft or liquid diet is all I can take right now. So mashed potatoes and oatmeal are my friends. The good side is so is ice cream. Yum.

I got into the hospital at 5:30am to prep for the surgery. I did manage to take some photos of before my surgery so I can compare afterwords.

You can really see my scar and the swelling that I had left.

They took me into the operating room while I was awake. I really don't know if this is a good thing or bad. Part of me never wants to see the operating table again. The other parts thinks its good to know what my surroundings will be. Guess the jury is still out on that one. But I did not have to worry too long as soon as they put me on the table out I was out in a matter of seconds. They did not even warn me. The next thing I knew I was waking up in IC Unit.

When I was wake enough the nurse showed me and my mom the plate. So this is it. I must say it is different from what I imagined. I thought it would be smaller or more flexible. Its very hard. Can not really make jewelry out of it like I thought. (HAHA) The color seems off too. I thought it was to be silver. Looks more like gold. Anyway. The doctor said that he tried to cut the plate out but he could not. Also that he had to take one of my implant studs out. It had gotten lose where my fistula developed and had to come out. He was not sure the exact placement of the implant but I would address that would Dr Sinada next week. I don't think I can recover that implant. I just hope it will not effect me getting my new teeth.

I really did not feel like doing anything. I did bring with me books and games to help the time go by. But all I wanted to do was sleep. Just sleep. I took a photo of my chin after surgery. I don't recommend anyone looking at it that can not stand the sight of blood. So be warned.

As usually my face swelled up like a big balloon. I am surprised that the side did not pop open. The above photo does not show it as the one below will, along with my new scar. I have to put bacterial ointment on it every day for about a week. No big deal. The doctor will take out the stitches next week. So I will need to stock up on Mederma or Scar Fade. But right now all I want to do is sleep. At least I am home.

It is Almost Time

2009-02-12T22:29:00.001-05:00

Just a quick thought. In 4 days I will be at the hospital having my 4th surgery and hopefully my last. The happiness that I felt before is now fixed with trepidation. I am glad that I am having this surgery but I fear for the outcome. What it does not work? What if it makes things worse? What if...

Ameloblastoma Awareness Day

2009-02-07T23:50:00.000-05:00

A lot of causes out there have their own day. Hey some even have their own Month. Why not Amelo? So heads up!! I hereby dub March 20th as Ameloblastoma Awareness Day. I picked this day for two reasons:

1. Its the first day of spring. Spring is a time of rebirth, renewal and awareness.

2. It was the first day that popped into my brain. Go figure.

Since this is such a rare disorder its good to make the world aware of it in some fashion or another. That is the great thing about support groups like the one I found on Yahoo! and Facebook. Its scary. I am not going to lie. It is why I and many others have made blogs about our experience. That and it's good for our sanity. Through education, research, advocacy, and support activities perhaps one day we can understand this disease or even stop it from ever happening.

Hopefully a very special someone will one day come along and starts a nice big foundation for Amelo. Until then, its up to us to spread knowledge and awareness. Tell your friends if they ever heard of it. Ask your families if they ever knew anyone with it. Google it. Just be aware.

UPDATE:

I just found out through Facebook that there is a campain for Febuary 28th Annual Rare Disease Day. So since there is already a campaign... so that is the new Day.

February 28th Rare Disease Day

This is from NORD

Rare Disease Day Partners

List of Partners to date

The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) and the Office of Orphan Products Development (OOPD) at the U.S. Food and Drug Administration (FDA) have signed on as Rare Disease Day Partners.

In addition, all organizations, societies, and companies working with rare diseases and/or orphan products are invited to become Rare Disease Day Partners. (For information on this, write to rarediseaseday@rarediseases.org). Partners are also being asked to:

* Write to their state governors requesting that February 28, 2009, be designated Rare Disease Day in their state. Click here to download a sample letter and sample resolution.

* Post the Rare Disease Day logo on their websites and in their publications.

* Make their members aware of Rare Disease Day. Sample Newsletter Story

* Encourage media coverage of Rare Disease Day by suggesting stories to their media contacts for that day or the week leading up to it. (NORD will provide a press kit soon to all partners that can be personalized and used as needed.)

* Share information about any activities their group may sponsor related to Rare Disease Day so that other organizations can benefit from reading about what they are doing.

* Share human interest stories about individuals and families affected by rare diseases to rarediseaseday@rarediseases.org, for possible posting on this website or for possible use by reporters covering Rare Disease Day.

* Nominate researchers to a Rare Disease Hall of Fame to be published on the website. This can be done by sending a brief (one page or less) summary of the what the researcher is doing, why it is important, and any results to date that have improved the lives of people with rare diseases. If possible, nominations should include a photo of the researcher.

Is it weird that I am happy?

2009-01-26T23:55:00.000-05:00

Surgery is 20 days away and I am happy about it. Not that getting my neck cut from ear to ear and then have my skin pulled over my chin so the doctor can take the titanium plate out is fun (gross I know). But I hope that with this operation that I will finally be done with the major surgeries.

I feel that over the last two years my life has been on hold in some way. Almost to the point where my highlight was waiting till the next doctor appointment (there has been at least 30), the next CAT scan (7) or the next surgery (3 to date). Well that’s not really true as I took some great trips over the last two years; Los Angeles, San Diego, Disney World, Salem, Mass to name a few. But I practically live at Johns Hopkins.

Speaking of Johns Hopkins I found an interesting fact about the name Johns. Turned out his great-grandmother maiden name was Johns. That is where he got the s in Johns. That is for all you history buffs out there.

Anyway, I will find out the week after my surgery when I meet with my oral surgeon what the time frame will be to get my implants done. So I may one day soon finally be able to eat on the right side of my jaw. Once that is done I will feel whole again. Well as whole as one can get with ½ my jaw gone and my fibula chopped off and moved to a different place... (Too dramatic?)

Two Words

2009-01-19T20:01:00.000-05:00

I think that says it all.

Meeting the Big Three

2009-01-15T19:26:00.001-05:00

Today has been a long day. Been up since 4am. That is the one bad thing about having doctors that are 3 hours away. At least there was no traffic and I am lucky my appointment was not next week during the inauguration.

My first appointment was with Dr B. and I brought up the concern of my swelling moving down to the bottom of my chin. He stated that the infection is looking for a way out and since the leaking in my mouth has stopped its trying for another route. He put me on Amox for 2 weeks to combat the swelling. I am really getting sick of taking all these antibiotics. Sometimes I just wish they stuck an IV to my arm and give me the drugs that way. It would be easier for me.

He also gave me the worst possible news that I could get. He has to cut into my neck again. All the way thru. He wanted originally to cut inside my mouth to take out the plate. But upon further examination and where the plate is attached too, he states he will have no choice but to cut along the same line as the original surgery and pull my face back and take out the plate. I almost feel like I am starting over again. He said he will not be effecting nerves but I don't know. Its a shame that he did the microdermabrasion on my scar last November as that was a waste now he has to cut back in. Maybe I need more then 3 weeks off of work.

I think at this time I zoned out. Good thing my mom was there but sometimes I wish I would bring a voice recorder to record everything that was said that way I could remember. I zone out sometimes. Its so surreal, Amelo.

I few hours later I meet Dr K. I have not seen him since April when I first swelled up. I gave him the run down of what has happening to me over the last 8 months. He took a look at my last Cat Scan that was done in November. I did not see any evidence of the tumor coming back as that was one of my fears. Just the swelling that occurred under my chin. He did put in his little Blackberry the date of my next surgery. He wants to take a look and see what I look like inside my jaw. If everything is fine then I don't need to see him for another 6 months.

He did mention a type of therapy used many for people who have radiation or burns called Hyperbaric Oxygen (HBO) Therapy. From what I understood and looked up later when I got home was that:

HBO is a non-invasive, safe, and painless treatment for wound care. During the therapy session, patients lie down in a specially designed glass chamber and comfortably breathe 100 percent oxygen. This, in turn, provides increased oxygen to damaged tissue.

He said this is usually done 5 days a week for a few weeks. Maybe this is something to look into.

After lunch my next appointment was with Dr Sinada. You should see the glee on this mans face when I told him Dr B would take the metal plate out. I know he was worried that the infection from the plate would hurt the chances of the implants taking. He said that if things go well he will be there for the surgery to expose my implants or metal studs that are inside my month. That would make me one step closer to getting my permanent teeth. HAZZAH! I was just worried that it would interfere with what Dr B. would do. He said it should not. But he would talk to Dr B and get some sort of game plan going.

He also wanted me to do a Dental Cat Scan. 3-D imagining instead of a normal dental X-Ray. But Johns Hopkins does not have that machine in the hospital. But his personal practice does. So off I went to Towson to get it done. I almost got lost on the way. So that was no fun. Good thing I went home after this. Its been a long day.

The infection is spreading. Again

2009-01-13T08:52:00.001-05:00

It’s a good thing that I am meeting my doctors this week because I don’t think I would have been able to hold off for much longer. It seems that my infection has decided to spread, again. I honestly think the only reason it took this long is that I am able to drain a little of it myself. Otherwise I would have 3 chins by now instead of only a chin and ½. My luck they will want me to get another Cat Scan. That would be my 8th in a little over a year.

Good thing its winter as I can hide the swelling by wearing nice thick scarves. In reality it’s not that bad but I do get a little self-conscious about it. But I do get to go out and buy pretty scarves. I am developing quite a nice collection.

33 days till surgery

I have my date

2009-01-07T10:13:00.001-05:00

I finally got hold of the secretary for my doctor at Hopkins. My next surgery, and hopefully my last, will be on Monday, February 16th. He will be taking the plate out and closing up the fistula that developed in my mouth. I wish he did this back in November but there is no sense in looking at the past. I guess. I also made sure that the secretary knows that I will be admitted at the hospital for a few days for observation. My track record and all…

You can not imagine the relief that I feel right now. This will be all over. I hope. No more surgeries. No more swelling. I will still have to get my implants (3 or 4) put in but that will be the normal part.

I have scheduled a meeting with every single doctor I have every dealt with at Hopkins for next week. I just want to make sure there is no possibility that my body is rejecting my fibula or if the tumor is coming back. That’s all I need.

I will find out more later.

I want my date...

2008-12-30T10:33:00.001-05:00

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

2008-12-24T18:33:00.000-05:00

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

2008-12-18T09:28:00.000-05:00

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

2008-12-17T10:02:00.000-05:00

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.

2008-12-10T16:29:00.001-05:00

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

2008-11-20T00:47:00.000-05:00

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!

2008-11-19T14:59:00.000-05:00

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?

2008-11-17T16:50:00.000-05:00

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"

2008-11-17T00:43:00.000-05:00

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

2008-11-16T00:15:00.000-05:00

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

2008-11-16T00:08:00.000-05:00

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

2008-11-13T21:00:00.000-05:00

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,

2008-11-12T22:26:00.000-05:00

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

2008-11-07T22:35:00.000-05:00

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

2008-11-05T18:35:00.000-05:00

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

2008-10-14T17:03:00.000-04:00

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.

2008-09-01T02:39:00.000-04:00

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...

2008-08-15T22:43:00.001-04:00

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!

2008-07-03T09:19:00.000-04:00

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...

2008-05-23T22:44:00.000-04:00

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

2008-05-02T22:46:00.000-04:00

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?

2008-04-18T23:23:00.001-04:00

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?

2008-01-25T23:19:00.001-05:00

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

2008-01-05T01:19:00.001-05:00

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.

2008-01-02T01:18:00.000-05:00

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.

I am afraid.

2007-12-31T01:17:00.000-05:00

Cast is off. Drain on my leg is gone. I finally got to see where they cut my let. For some reason, I thought they would cut in the back of my leg. But the incision went in on the side, from just under the left side of my knee to just above the left side of my ankle. There are staples going up and down where they cut. The sight of it is quite bizarre. You could see the purple pen mark where they placed where they would take part of my skin to do a skin graft if needed be/ Thankfully they did not need it.

With the cast off and my leg wrapped the gauze comes physical therapy. I have a walker which was given to me so I have a little freedom to move around. The I really only hope around. I can place just the slight bit of pressure on my left foot. My foot feels so weak that I am afraid to walk on it. That and it takes such a great deal of energy I get quite fatigue quickly.

The nurses and my PT rep advised me to walk around the wing for exercise. The PT rep would walk me around the wing and few times to get use to it. But the best thing she did was to had wheels to the bottom of the walker. Which let me tell you changes everything. I almost felt free and for the next few days I felt very confident with the walker. Mind you if I had been sitting for a while and try to get up I would have to reacquaint my foot again to the pressure of walking. It was not quick. But I think the best part was the I could go to the bathroom without the aid of nurses or assistants. Ah freedom!

When it came to take out the staple in my leg I was quiet apprehensive. I was afraid that it would hurt a lot and with the pain I have been though both physical and emotionally I wanted to avoid it at all cost. But to my surprise it was just a pinch. They took half the stitches out one day and the other the next.There was a little bleeding but not enough to frighten me. Though my mom had to leave the room when they did this. Bless her. The nurses placed some medical closure strips to help the wound close up and then wrapped the leg gauze.

Of all this what scared me the most was the day I would walk with out the walker. I got so used to it that it almost felt like it was part of me. The PT staff was there in case something happened to me. In fact when she asked me how it felt I replied, "SCARED". I remember crying in my room after the first time out of fear. But I knew I had to do this sooner then later so I would practice a little in my room from on corner to the next, always having something to grab onto encase I lost balance. Which did happen a few times but the worst was in the bathroom. I lost balance to bad I almost fell. I did grab the handle bar in time but my left foot landed in such a way that it caused me great pain. Stupid girl. But with time and patience I would be ok. I hoped.

I need sleep

2007-12-28T01:13:00.000-05:00

It's true what they say. You can not sleep at a hospital. Rest is an important part of the recovery process. I just don't know how you are suppose to sleep when every hour someone is coming to check your vitals, check my flap to make sure it's taking and nurses are coming in to draw blood or giving me shots. Ouch!

It's also hard to sleep with two drains and a tube up my nose. I will once in a while end up pulling on the drains at my neck, which does hurt. I also usually sleep on my side but its hard to do that now. I have to sleep on my back with my back raised. The pillows in the hospital don't help as they are not that conformable. I found that the best sleep I can get is when I am in a chair that reclines and have my leg propped up. I only sleep in the chair during the day but I find that and oxycodone helps. But only for a couple of hours. They took the drain off my leg a few days ago, so that helped a little.

Temperature in the room is usual fine but somehow at night I get very sensitive. I am either really hot or really cold. I do have control over the temperature in the room. But no matter what I do it does not help. And the weird part about that is neither does the oxycodone. I mean I don't have pain, its just it does not put me to sleep as I would hope at night. I sometimes sleep with a cold wet down on my forehead. I dot know why but I find that relaxes me a little.

Also I can not sleep if there is a light on. The nurses when they come in sometimes forget to close the door. So naturally all the bright hallway light comes in. This caused a problem as I have to call them back in to close the door. It only happened a few times but still.

I can not wait till I get home in my own bed. When ever that will be.

A Second surgery

2007-12-26T01:13:00.002-05:00

Its Monday, four days after surgery and I feel like crap. Yesterday was a good day but today something is not right. They doctors want to do a CAT scan because my face seems to be little too swollen. Physical therapy was to come today but I don't know what is going on. They stopped giving me solid food. They should have tube feed me since day one. I feel sick.

I went for my cat scan. What a painful experience it was. They wheeled me down to the 2nd floor (I think) I felt every nausea. I hopped to the bench but when they were trying to get me to lay down and cried in pain. The pressure and swelling was too much in my neck and face that I needed support to lay flat on my back. The nurses asking me what was wrong. I need head support. It was too painful and I could not support my head. They helped me lay flat but it still hurt.

After that ordeal, I went up to my room. Mom was there as well as Carol the Physical therapy trainer. She could tell something was wrong. The wide eye and happy expression I had a day ago was gone. Instead a painful and sad girl laid before her. Obviously no PT.

Doctor Koch came to my room saying that there was some sort of infection that need to be taking care of right away. In other words they needed to go back in. GREAT! :(

They wheeled me down to the operating room. Very cool. I remember the wall being lots of pink and beige. The doctors and Anesthesiologists were there. Introducing themselves. Somewhere from the first surgery. Dr Koch would not perform the surgery. Instead Dr B or as I heard the nurse say, team 2 would perform it. They wheeled me into the operation room. Just like the hallway, pink and beige. They tried to get me on the table but I ended up landing half-ass. I was trying to say lets try again but before I could do it they lifted my legs and dragged in around on to the table. As the tired to lay me on to my back I gave another loud scream. My head and neck again. No support. I laid there almost in tears. The anesthesiologists put a mask over my face and said breath. At first I thought it was just oxygen but then I smelled some sort of chemicals. I assume this was to put me to sleep. Well it did not work. Not right way. Before I know it I felt some sort of tube being stuck into both my nostrils. I was saying no, wait, stop. It was painful. That lasted only about a minute or too. Then I was out.

I woke up with almost a fright. I felt something being ripped from my throat and an urgent urge to go the bathroom. In fact that was my first words. I have to pee.

After I left ICU I went up to my new room. Same floor that I was in, 4th, but the room was a corner room and much bigger. At least I could feel I could breath. Though it was a little hard with a feeding tube now coming out of my nose. They should have done this since day one then trying to make me eat right away. I also had a new drain on the left side of my neck. So now I had a matching pair. Face still swollen of course.

It was December 24th, Christmas Eve. Did not feel like it. My mom got me a little fake tree, smaller then a Charlie Brown tree. More a toy then at tree but it was cute. I remember around 6-7ish I heard a nose coming out from the hallway. It was Christmas music. I thought it was cute that the nurses were playing music for the holiday. But they weren't. It was carolers. A big group of carolers singing up and down the hall. Mom opened to door so we could hear better. You name it they were singing it. Which was nice. When they got to my wing they stopped right in front of my door and started singing Come all ye Faithful. One of my favorites. Mom was looking at them by the door. Good thing because before I knew it I started crying. All the weight of what has happened, especially over today hit me hard. I was even taking the suction for my mouth to take away my tears. I did not want my mom to see me like this. I knew if she did she would start crying. But I could not hold it. When the carolers left I broken down. Mom was like why are you crying? I want to go home. I am tired and don't want to be here. I want this to be over. Be Strong she said with tears coming out of her eyes. Of course as soon as I saw that I slowly stopped crying. But it did not last long. As soon as she left for the night I let it out again. My face, my leg, so tired. 5 days in the hospital, two surgery's and now three drains attached to me.

Here is a photo of my new look again with eyes blocked.

Happy Christmas.

My throat is dry.

2007-12-24T01:12:00.001-05:00

The next few days were a blur. I was in ICU for about a day or two. I believe I left there on the 22nd late at night. I remember them rolling my bed up to the 4th floor. The room they had me in was small. The walls were painted white on one side and a ugly shade of purple on the other. Made the room seem smaller. The bathroom was on the corner of the room near the door to the hallway. Not that I would see the bathroom as I had a catheter in me now. The room also included three chairs. One that reclines and was used for me, one that pulls out and a guest could sleep on it and the other for whatever.

I remember as they lifted me from one bed to another that they had an EKG machine at the ready. No issue there but my heart rate was high. 150 beats a minute. Could be stress. I was hooked up to some IVs on both my right and left hand. In fact, my right hand was in some sort of cast in which several IV sites could be used.

My face did swell up to a big balloon, chestnut, watermelon, you name it. I am not comfortable yet with what happened hence the black lines.

Me three days after operation. Yes I took out my eyes.

Over the next day or two my throat got very dry. I was on some sort of liquid solution as nourishment's. They tired to get me to swallow water but I would end up coughing. In fact they even tried to get me to eat solid foods. I laughed at them. What are they kidding. SOLID FOODS?

I used a saline solution to keep my throat as moist as possible. It helped to a point. I would have to use it almost every 10 minutes to work properly. It was especially hard when I would wake up in the morning to an extra dry throat that I could hardly speak. In fact, the nurse could not understand me when I called to get help to use the bathroom that she had to come into my room and ask what I needed. This was after she hung up on my. In which I gave it to her and everyone who came into the room that night with what little speech I had. Never hang up on a girl who just got operated on. NEVER!

I had a few visitors over the few days. Carol from Physical therapy came back and helped me get out of the room. Which I appreciated as I could only have four ugly walls for so long. I still could not walk as I had a cast on my left with a drain, so she ended up rolling me on a wheel chair around the halls. I had a speech pathologist come by and go over my speech and my ability or lack there off for swallowing. She was not very helpful. She kind of gave me the work through it speech. It was not until the doctor on call that came by and helped me get a comfortable swallowing position. Turn my head to the right, take a breath and swallow. And you know what? It worked? I could swallow, carefully but with success. It felt good and my throat would become less dry. Thank god. Things were looking good...