Thanks Robert. duh...I hadn't thought to go out to their web page. I am perusing around now. I am scared today....hadn't been scared until now. I think I've read a little tooooo much. I'm going to stop reading for a while, at least until after I meet with the surgeon. I know enough now that I won't be completely ignorant when I see him, and any more information is just spooking me.

Thanks again everyone. I will post more after tomorrow.

Jennifer

Hope you get the best possible news from your meeting with the surgeon Jennifer. I know what you mean about reading too much, before then, and thinking the worst. I did a little of that too. It's a good idea to manage the information you expose yourself to at first, so you don't get too scared over things that may not be relevant to your case.

Some people ask their spouses or a friend to do more of the reading at first and then share it with them. I preferred to read on my own but found it a much more focused and less scary endeavor once I had more info. about my disease from my docs.

Dear Jennifer,

It's OK to be nervous. We've all been there. You have decide how much you want to know. My suggestion is to find the strength to learn as much as you can. Share the info with family and friends. The more heads the better. While you undergo your treatment, these people will be there looking out for you and the more they know the better. I know it took me at least 2 weeks after surgery till my head was clear and I relied very heavily on my wife's decision making.

Good luck tomorrow and my prayers are with you.

Jerry

Hi Jennifer,

Be certain to take at least one person with you tomorrow. Two sets of ears are better than one, especially whne youhave ot digest all this new info and make decisions.

Keep us posted on what the doctor says.

Take care,
Eileen

Thanks everybody. My wonderful husband went with me yesterday and together I think we retained most of the information.

My tumor is far enough back on the tongue they will have to split the jaw to get to it. I am also looking at a skin graft due to the portion on my jawline, and a selective neck dissection.

I was prepared for the skin graft and the neck dissection...but the jaw split caught me completely off guard. I handled the news okay, but it really hit home while talking to the plastic surgeon. I am going to have one hell of a scar.... but...at least it sounds like they think it's contained and can be completely removed with surgery. The Dr. has told me to expect around 10 days in the hospital with the first in ICU.

I sure would like to hear from anyone else who has had this type of surgery. Also...any advice on what to tell my 7 year old? She already knows I'm going to have surgery. But, I haven't mentioned cancer around her yet. She is a very mature little girl, and I'm sure she will pick up on it once more of our friends are aware of the situation. I think I can tell her without scaring her (i.e....remember Aunt Ruth had cancer? She's fine now...). I would just rather her hear it from me. Any advice?

Thanks,
Jennifer

Jennifer,

I cannot comment on the surgery but I can certainly tell you about the kids.

TELL HER THE TRUTH! I do not mean that you need to overwhelm her with things that she won't understand.

I have 2 sons 8 and 11.... From the beginning I have told them what this means. They know that they could loose their father. They know that he is very sick. They are a little young to really understand it all but my husband and I decided that it was best to tell them the truth. He told the boys that no matter what happens that they should always know that he loves them.

This has been extremely difficult on our children. I had to get our youngest into therapy last week because he got really angry at me and threw his backpack at me.

This is a family struggle and I know there is a tendancy to want to protect those we love. Just know that we are not protecting them when we leave them in the dark and when we are not honest about the turns that happen in life.

Dig deep and you will find that you know the right things to say. She will cope so long as you help her. Tell the truth and try to explain as best as you know how. Also help her to find outlets where she can explore the feelings that she cannot share with you.

None of us knows what is going to happen. Cancer brings death to the forefront of your thoughts. That cannot be avoided. But you can take the moment to explain it too her and to hold her as much as you can. Love knows no boundaries, even in death. That is what you make sure she knows no matter what happens.


Best of luck!

Cindy

Jennifer, I didn't have the jaw split but I have seen and heard from many that have. Just like the radical dissection, it sounds much worse than it is. The thought of any surgery can be a fright. For God's sake don't go looking at pictures on the web! Leave that to the doctors. Practice the one day at a time thing and if that is too much go for one minute at a time.

As far as young children are concerned, I agree that the truth is always in order...but not necessarily all the truth at once. Kids are perceptive and will know by "reading" the other family members as to how serious this is now or gets later. As of now I would suggest that any comments about mortality be saved for later unless the child asks. You are not dead, and in fact you have a very good chance for recovery. Children have a different concept of this subject than we adults. Often their reactions will be different than you might expect or prepare for.

On a seperate but important subject, be sure you have financial and estate documents in order. Many states have laws about how property is split if there is no will. You will sleep better if you and your husband see an attorney and get a will for both of you and perhaps trust documents on behalf of your children, as well as personal medical directives. These documents should always be up to date but especially when children are involved. This should not cost more than $200 to $400 dollars.

I DO NOT suggest this because of your cancer!

This is something that all parents should do. My wife and I put these things off for years until just a few days before my surgery. When our attorney explained the laws of our state I was really mad that we had waited so long.

Take care

Hello Jennifer,

I had my jaw split to allow access to my tumor on my right tonsil. It was not as bad as i thought it would be. I was home in 8 days after surgery. Also the scar is not to bad. Gets better as each month passes. While it's no walk in the park I know you will do fine.
As Mark said take each day as you can and soon this will be behind you.
Hoping your treatment goes well and you have a complete recovery!!

Best Wishes, Danny Boy

Good. You all confirmed my first instinct. I will just tell my daughter the truth about what is happening. I won't overwhelm her, but I feel like I need to be the one she hears the word "cancer" from. I'm not going to talk about death, because I think that would just scare her unnecessarily...but I am going to talk about the surgery so she will be prepared for the scar.

Danny, was your jaw wired shut after the jaw split? How long before you could eat? Did you have a tracheotomy? My Dr. has told me I should be swallowing my own food before I head home, which kind of surprised me.

As always...your support is the best. Thank you.

Jennifer

Jennifer,
I had my jaw split and had half of my lower jaw removed. I was eating very well two weeks after the surgery. I did have a trach which was the part I disliked the most, but it was out within a few days and some don't mind it at all. The trach area took approx. 3 weeks to heal. My jaw wasn't wired shut.
The scar is small and I believe will continue to get smaller. Many don't realize I had anything done to my chin.
Good luck with it.