Monday, December 31, 2007

I am afraid.

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.

Friday, December 28, 2007

I need sleep

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.

Wednesday, December 26, 2007

A Second surgery

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.

Monday, December 24, 2007

My throat is dry.

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...

Sunday, December 23, 2007

No Lip?

I don't remember much when I awoke after surgery. But what I remember was this. It was about 6:30 when I came too. Although I was drifting in and out of it I could see a clock in front of me. I heard two voices both telling me not to talk. One I believe was a doctor or nurse, a male voice. The other was my mom. That was very comforting. I asked for a pen and paper to write something down. The first thing I wrote was, "No lip?" I am surprised they understood as I was writing with my left hand. My right was covered in almost a cast like harness with tubes for IVs coming from inside it. Lucky the staff said my lip was fine. They did not touch it. I smiled, well as best I could.

I asked my mom later what I looked like. She said I had so many machines attached to me. Assuming to monitor this and that. I knew I had a tube going down my throat. I believe that was for oxygen. I remember writing something else down and asking a question but I don't remember what that was. I remember someone commenting on my writing and mom said I was right handed not left.
The rest of the night was a blur.

Friday, December 21, 2007

Johns Hopkins

Its been a while since I last post. Mainly because of the stress of trying to get everything ready, work, personal information and selling my home to name a few. But after all is said and done, I did pick Johns Hopkins to do the surgery. The date would be December 20th and yes, I would end up in the hospital over Christmas holiday. Some people at work asked if I should change it but I rather leave it and get it done sooner rather then later. Don't want this thing growing any bigger.

My mom, brother and I went to Baltimore the day before. Surgery would take place on the 20th at 8:45 am. Naturally a hotel stay before hand would be better since we do live 3 hours away. We stayed at the Hyatt in the Inner Harbor. Nice vice but the place was deserted. Guess because of the holiday. I really could not sleep. Nerves I guess.

Upon arriving at the hospital at 6:15 am I had this numb feeling. It was so surreal. I was not about to go through this. It was someone else. It did not hit me until I got changed into the hospital gown that this is it. I am about to get cut into my neck and leg. I am about to lose part of my leg bone, lose part of my jaw and teeth. Who knows what I would look like. I started to get scared. I knew that this was the best hospital for me. But I could not help to get scared. Several nursed and anesthesiologist came in and asking me questions. IV was placed in my arms. Blood pressure taking as well as heart rate. I am surprised it was not 100+ beats a minute.

The first doctor came to visit me around 8am. Doctor Bohemen, who was doing the Reconstruction part of the surgery was going over Little of the process. He marked the leg he was going to use as well as side where they would remove my jaw. He went over the same thing he did upon our first meeting except for one thing. He stated he may have to cut a line from my chin to my lip for the Reconstruction. WHAT!!! No one mentioned this before. No way was I about to let this happen. He left to, what i assumed to prep for the surgery. At this point mom and bro were allowed to see me. It took a bit for me not to get misty eyed. But I held it together ok. More anesthesiologist came in an asked me more questions. Then Doctor Koch came in. I don't remember much other then mom and bro said there goodbyes and gave kissed and hugs before they welled me off. Mom started to crying which made me sad. But I did ask the doctor about the lip and that I don't want it cut as no one said that would happen before. Doctor said that would not happen. I hope he was telling me the truth. But as the Doctor was going over the process i started to feel funny. Drunk even. I looked over and asked the anesthesiologist if they started the drugs. She said yes. Bad timing as I was talking to the Doctor. I looked over to mom and brother with almost a sleeping smile. They started to wheel me away and that is the last thing I remember. I was in the doctors hands now.

Sunday, October 28, 2007

My Head Hurts

Well this week I will find out what hospital I want to do the surgery. I meet the doctors at Johns Hopkins on Tuesday. My last opinion. I could keep going but what would be the point. I know... I know I have to get this done. The process is about the same from the two other doctors I had spoken too. Just got to figure out who I like better.

I find myself getting really tired. I don't know if it's stress from the Amelo thing, work, selling my home or all three. Maybe it's life in general. I find that I just want to sleep. Too much going on all that same time. Deep breath.

Sad part is that I had a trip planned to go to Italy next year. It would take place early spring. That is not going to happen due to the surgery. Grant it, I don't know when it will take place. Just that I will and hope to be recovered by then. But who knows.

Too tired to write anymore. Think I will go to sleep.

Wednesday, October 17, 2007

Off to meet the Executioner

Today I finally got to see the doctor at University of Penn. I think I went into that office with a big chip on my shoulder. Can you blame me? Dr Carrasco (mom said that this mean executioner in Spanish or something) was told what happened the last time I was there but it did not seem to effect him. Ok, strike one.

He looked at the x-rays I had and told me basically what that other doctor did. But he mentioned taking the bone out of my leg, the fibula, rather then the hip. He would not perform the surgery to remove the fibula, another doctor would. He also states that recovery time will be more then a few months. A year to be honest. The other doctor did not state that. He also said that this operation is not a walk in the part. It is a big deal and that he knew the other doctor I met first and advised me that he is a good doctor.

I started to get upset, not that what he was saying was hurtful but the fact that he was treating this as it was. A serious case. I did not get that sense from the other guy. I started to cry. I cry a lot lately.

He also mentioned a Dr called Dr Marx in Florida. Now I heard his name in passing on the Yahoo! Support Group site. But I am not going to Florida for this operation. I thought about seeing someone in the Mayo Clinic down there but it’s too far to travel.

I don't know what I am going to do. This is all too much.

Monday, October 15, 2007

Get over your God complex!!!!!

It comes a time when picking a doctor where you can tell if he or she is the right one for you. I was trying to get as much reassurance from the doctor at Thomas Jefferson to make sure he was the right one for me. It's never a good sign when the doctor does not give that to you. I don't know if I hurt his feelings or he was just frustrated with me or thought he was king of the world, but I told him flat out that I really don't know much about his skills or him. I would like references or maybe look at some before or after photos. He stated that he does not like to give them out, references that is. It's almost like take me as I am or leave me. He could not show me before and after for HIPA reasons. I guess I could understands that part. But what killed me was the comments he made. I don’t need anymore surgeries and that I was doing the runaround by not making a decision. WHAT?

He and his associated encouraged me to get 2nd and 3rd opinions and now he accuses me of doing a runaround? Naturally I told him off on that part. He also made a comment about not going over all the options as I have not made my mind yet. Hello, is that not the whole part of one making up their mind but getting all the facts first. And the comment about not needing any more surgeries. Well let me take this one off his table.

Nope, not for me. Bye Bye Thomas Jefferson.

Sunday, October 14, 2007

I am not happy with that Hospital!

A Second opinion. It was Thursday, October the 11th. Today I had an appointment for my second opinion for the procedure to remove the tumor as well and to check out the doctor at a different hospital. Now I called the office direct on the Monday prior to confirm, as well as confirming that morning. Both times the appointment was verified. I had all my Cat Scan films and x-rays, biopsy reports and copies to give to the doctor. I had a list of questions all ready to ask including wanting to see the doctors CV. I felt well prepared for the appointment. Boy was I in for a surprise.

I found the office with easy. I was a little worried as the Hospital was quite large. I went up to the reception desk giving my name and who I was suppose to see. Long story short the doctor was not there. In fact none of them were. They were in some seminar in Hawaii. I was floored. I called twice to confirm. I was given yes both times!!!! I lost it.

I broke down. I have a TUMOR!!! Where is the doctor? I called twice!! I demand to see the office manager!!! I said all this in the middle of crying my eyes out. I did not need this. Other office patients were looking at me. I did not care. I was wondering who the heck their were seeing if the doctors where not in. I just felt bad as my mom had to watch me go through this all. I hope they don't perform surgery the way they operate the office or I would be in major trouble.

Upon speaking to the manger, still crying my eyes out, I did not feel that much better. She admitted it was their offices mistake. DUH! She gave me money for parking. But that was it.

Of course I will not let this go. I am written a letter to everyone at the hospital regarding this really bad and terrible experience. Not only am I stressed about this tumor, I can now add I am stressed about this hospital. Thanks U Penn.

Tuesday, October 9, 2007

Done in by toast?

Cinnamon raisin toast. Lightly buttered. Sounds good... does it not? It was the morning of Monday, October the 8th, start of a new work week. It had been well over a week since my biopsy. A good week of eating nothing but mashed potatoes, soup and the nutritious Ensure shakes. But after a while a girl needs some solid food. Since I was feeling much better both in spirits and in looks (my swelling went down quite a lot and I stopped looking like Ms Elephant) I could start eating more “normal” food. Little did I known it was the worst thing that I could do.

As I was enjoying my piece of lightly toasted cinnamon raisin toast I felt this big pop in my jaw. The same area where my biopsy was performed. WHAT WAS THAT? Did I just break a tooth? Needless to say I stopped eating right at way. I called the doctors office. My Doctor was not in as he was in sunny Hawaii for some seminar. So a made an appointment to see one of the other doctors there. When I got to the office I was informed that I could have fractured my jaw. FRACTURED MY JAW! The x-ray was inconclusive as the tumor was in the way. I had to wait till 7 pm to get a CAT Scan, my 3rd in 1 month. Should I be glowing? Great more background radiation.

The doctor called me the next day and told me that the CAT Scan was also inconclusive. He gave me more antibiotics and since I did not feel a bite difference I should be ok. SHOULD? I asked the doctor what would happen if I did indeed fractured my jaw. He said that I would need to have the surgery sooner then later as there was a chance for infection, hence the subscription of more antibiotics. Great. All this scare. Guess I was done in by toast.

Saturday, October 6, 2007

Doctor, I have about 80 questions to ask you...

Yeap, you read it right. After looking on the internet of top questions to asked a Doctor before surgery as well as anything I could find on Ameloblastoma, (gosh, that is still hard to say AND type) I came up with a list of 80 questions. The questions ranged from, "What causes this disease? What are your credentials and training experience?" Don't know if the doctor and Thomas Jefferson Hospital was all to happy to answer them but I did not care.

I had my mother there for support. I think she was more nervous then I was. I love my mom to pieces. Anyway, we got to the point where what will happen to remove that tumor (UGH hate that world). Turns out that they have to remove 5-6 teeth and my right jaw. (WHAT!) Also they have to cut a piece of bone out of my hip and place that where my jaw once was. He stated that my hip surgery will hurt more then my mouth. There is no guarantee that the bone graft will hold. There will be scaring, possibly disfigurement and pain. To top it all off, I will have to get my jaw wired shut for 6 weeks. (Anything else you want to throw at me doctor?)

I already knew before I went into the appointment I was going to get a second opinion. I made one with the University of Pennsylvania for next week. I also called the Mayo Clinic in Jacksonville, Florida and the John Hopkins Medical Center in Maryland for 3rd and 4th opinions if need be. I can honestly tell you I am in such a state of denial about the whole thing. I really should not be since this disease has been staring me in the face for the last week ever since that doctor did the biopsy and my face swelled up to a size of Mt Rushmore. But at times I am looking through a mirror a different persons life. This is not me. I don’t have this. I am not going to be scarred or disfigured. I am not going to be in pain. I am not…not… I wonder what the doctor will tell me next week?

After the whole ordeal with the doctor on Thursday I was so tired I went to bed at 8pm. If you knew me that never happens. Eleven or twelve is usually my norm. It's all stress. I am trying to read as much about this on the internet but I am not finding a site that gives me what I need. I did however, find a support group on Yahoo for this disease. I placed a link at the bottom of my blog. I am hoping that they will give me some real insight into this crazy world that I just came part of. Well, at least here is hoping.


Friday, October 5, 2007

"Hi, I have Ameloblastoma. How are you?"

“Hi! How are you?”

It’s a simple question. Most people under normal circumstances would answer, “Fine, thank you very much. And you?” Naturally you would expect a response as, “fine, good, not bad.” A few simple words. Does not really mean much. I would often answer in the positive when I was in quiet an irritable mood. After all it is the polite thing to say.

But no more. I have not said I was fine since Tuesday, October the 2nd. 3:14 PM if I remember the time right. Not since I heard the words benign Ameloblastoma Tumor. Amelo what? Tumor? I have what? Ameloblastoma. I believe he said Ameloblastoma. “Sorry Doctor can you spell this for me? I need to put this all in my blog."

Naturally I rushed home from work. “He said benign. He said benign. That’s good. Not cancer.” I kept saying that to myself all the way home. When I finally got on the internet the first listing that popped up was good old Wikipedia. Figures. They describe it as a rare (lucky me) benign tumor that develops in the mandible. Yes, the doctor told me this much. I did not want to ask him too many questions while I had him on the phone as my head was going to explode just from hearing the words tumor. I had a consultation with him scheduled in a few days.

But how does this happen? Did I not brush my teeth enough? Is this a gum disease that the dentist never mentioned? Upon reading what I could find on the internet I got scared. Deep breath. Just wait till you see that doctor. He will answer all your questions... Or maybe not.