This surgery can not come soon enough. I now have an ulcer where to PET scan did light up and I have a hard white spot where my wisdom teeth used to be. The back of my togue is getting bigger and now has an actual hole in the area. This is getting worse by the day. How can a spot light up like a Christmas tree on a PET but nothing show up on an MRI? I am so scared about what is going to happen at the rate this thing is growing and changing in my mouth. It was not there just 10 days ago. Anyway, I know that I can not control what is happening, but I can control how I react to it. It is amazing the fear I have, but also the peace that I have about the decision we made to go ahead with the surgery instead of waiting for a second opinion. I know second opinions are important, but my oncologist said that at the rate this thing is growing we may not have time for a second opinion if it is cancer. I saw him just two weeks ago and I had no pain in my tongue. My complaint was my back which is why they did the PET scan. We were not even concerned with the tongue.

I am so sorry you've had a recurrence. Cancer sucks! My heart and thoughts and prayers are with you!

I am praying for you and your medical team!!

Angelia,

Just wanted to let you know I'm thinking of you and keeping you in my prayers.

You are eloquent, honest and brave, Angelia. I'm praying for the best.

Marlene

My thoughts and prayers are with you, too, Angelia - and hoping for the best outcome! You have amazing strength. Having made a decision does bring a measure of peace with it.

Angelia:
My prayers are with you that what you have isn't cancer, but something else causing those problems. I hate that you hurt so much - you are so young and shouldn't be suffering like this. Please let us know when you find out anything. You have all the OCF members praying and concerned about you. You are blessed.
julieann

Angelia, you're in my thoughts. It's hard even to imagine what you're going through. What a fighter you are!

David 2

Angelia, it seems each day brings you different news. Damn this stuff. I'm going to request that Brings you the cure if he has one so that you can relax and enjoy life like you used to. Maybe God is testing you this way but I SURE HOPE NOT. You have been thru too much hell and high water.

Well, we know it was not cancer. The pathology report said something about fibrosis. I begin HBO treatments on Tuesday as it is not healing and I now have exposed jaw bone.

Angelia, ask your ENT about putting tubes in your ears prior to starting HBO. Ive heard of some HBO facilities not taking people til they have the tubes.

I see your signature says HBO on 1/4/11. Is this for a consult or are you starting then? How many dives does your doc want you to do? Ive done 125 over the course of 3 different sessions. It will help heal you. Try to forget about the "what if's". There is always minor surgery to attempt to cover the open area. Your body must heal this wound from the inside out or there would be an open pocket left. Ive walked around with an open spot for almost a year without a problem and that was with doing HBO. It has since been closed by my last surgery. So, you see, nothing to worry about!!! you are cancer free which is the most important thing.

Angelia, hoping this treatment will take you off my "re-dial" list for prayers! Get well soon, young lady!

I am doing 30 dives, and if the bone is still showing I will have some of that removed and then 10 more dives. I need some movie ideas, cause I do not think I have 30 movies I want to watch that are PG-13 and under. I was told I could bring my own DVD's but they can not be rated higher than PG-13.

It get very boring inside that tube. It sounds kinda liek a fan is running so most of the times I went, I would fall asleep. Maybe thats why I felt so good when I had HBO. I got enough rest for a change. Im sure a nap would do you alot of good. When I went, I ended up getting sucked into the Sopranos. I would watch it every day. Im sure you will find something on tv to watch to break up the monotony of movies.

How about getting tube put in your ears? If they didnt discuss this with you, then I would be concerned about where you are going to go for treatment. I did alright for a while but some days I couldnt dive cuz the pressure hurt my ears. Its very important to let them know if you feel any discomfort. You do not want a ruptured ear drum.

Have you already gone to tour the facility? There are alot of dos and donts to getting HBO. No makeup, perfume, hair get, hair spray, baby powder, nail polish....basically no girly stuff. My nurse would tell me if you werent born with it then you cant take it in the tube.

Yes, I have seen the facility, and have been told if you were not born with it, it doesn't go in. We have discusse tubes and the Dr. did tell me that there are some patients who end up needing them and others that have no problems. While I was getting my "education" a man came in who had not been there for at least a week, because he had to get tubes in his ears. One thing they kept asking is if I ever have problems with airplanes. I never really had too many problems with them. The Dr. told me she wanted to go ahead and get some oxygen going on the wound as it has not healed at all in the last ten days. She said if my ears give me problems after a few times we will then talk to my ENT about getting tubes. I so appreciate all your information. I just hope this covers up that bone. I have so many questions and concerns my head is spinning. This DR. is the only one who said anything about the bone being exposed, but she is a wound specialist. Christine, you are an amzing woman and so strong. I admire your strength and look up to you for that.

One thing that is funny about HBO. The oxygen doesnt need to be on the wound to heal it. So you dont have to lie there with your mouth open Oh yeah, make sure you take a clear plastic water bottle. It gets very dry in there. You may also need to take a few sips of water to help clear your ears while going 'down'.

Angelia,

I did 45 dives without getting tubes. I did have some problems with my ears at first, but after I got the breathing technique down while �diving� I was fine. The facility should train you on that before you take your first dive. They also suggested using a nasal spray like Afrin one hour before treatment � check with your doctor first.

Unlike Christine I could not sleep while in the chamber, so I brought my own DVDs. I watched the whole Sopranos series (not sure if that would qualify as PG-13 though), plus some other TV shows I got from the video store. It definitely helped with the boredom.

I sure hope the HBO therapy helps you.

I am not allowed to have a water bottle in the chamber with me.

Ive been treated at 2 different HBO locations and both places allow a clear plastic water bottle. I only have to take the label off. You might want to ask about this.

Susan, thats where I got hooked on the Sopranos (LOL). I would watch it on tv everyday.

I was also treated at two different hospitals (not the same two that Christine was treated at), and both provided me with a water bottle to take in with me. I felt that the swallowing while sipping water during the "dive" help with the ear pressure.

I have asked about the water and dry mouth. We are absolutely not allowed to take anything we were not born with in the chamber. I will be taking my pain meds 30 minutes before I go in and my magic mouthwash right before I go in. I guess every place is different.

Wow, that facility sucks. Mine was a blast really, in fact I made some really great friends in the Dr's, nurses and Techs that did my treatments.

I got to have juice or water in plastic bottles. Nothing to eat though due to the choking hazard...basically I showed up, got some juice, popped my pain meds (before I went in) and started watching tv or movies. I would have awesome conversations with the tech, we still facebook to this day while watching tv. I would use it to sleep too sometimes depending on how exhausted I was.

The only time it sucked was when my fentanyl patch ran dry and I started going through withdrawels in the tube. I was a big bag of addiction when I finally got out of there lol.

Remmber, I live in a small town, and this facility is very very strict. I will be able to watch TV, take my pain meds right beofer I go in, but they are really, really concerned about fire hazards. I really like everyone there, and I do not have any other facility near me to go to. I am lucky that they have one in Tulsa, OK at all.

I have no idea why you aren't allowed water. I was told to take a plastic bottle with the label removed. For the few days I was in it, I always had a bottle of water. Just nothing that a spark could ignite such as even after shave or deodorant as they ontain alchohol. Another thing was socks. just all cotton was allowed.

Forgot that Like Eric I could watch TV in there and sure did talk to the tech a lot.

I will get to watch TV and be able to talk with the techs as well. Not sure whay not plastic water bottle. I will ask again tomorrow.