congrats on ur cancerversary!!!!

Thank you, everyone, for all the help you have been giving me. I am learning a lot from your posts and the links you all are providing.

Christine,
As you can see, I have added a signature.

It looks like you have already gotten a lot of information. I am glad you found us. This is a great place to be for support and ranting and raving. Askk all you need. Keep you in our prayers.

Today my brother underwent an eight hour surgery. The doctor removed about half of the bone of his lower front jaw. As it stands now he has clear margins and most likely will not need reconstruction if the margins show clear on the path report.

Several of the lymph nodes in his neck were slightly larger than normal. We will have the results of the path report in about four days. He will be needing rads and chemo.

I will know more tomorrow when things have had a chance to calm down. Right now my brother is getting excellent care in the ICU.

any updates??

First let me say I will keep a good thought for you, your brother, and your family.

My husband has had a GI tube (a tube in his stomach) since he started chemo/radiation August of 2009. The nutrionist on my husbands team provided us with several options for prepared canned feeding. Unfortunately these all seemed to cause a lot of GI upset and discomfort. Ultimately we (the nutrionist and I) came up with a diet I could make at home in the blender. I actually preferred this to the canned nutrition, but I would not have taken it on without very clear guidelines from a professional. Since he has completed all of his treatments, and nausea and weakness is no longer an issue, my husband is now in charge of preparing his food. He pretty much eats whatever we (the kids and I) eat, it just goes into a blender with some organic whole milk or organic chicken broth.

Jen

What a good sister you are. As for the feeding tube, as Christine noted, not every oral cancer patient needs them. You can see from posters like EZJim that even with massive jaw surgery and teeth removal, that the key is whether or not you can still swallow.
The majority of OCF posters who did get feeding tubes only had them for what I consider a very short time. The small minority like myself and Roger Ebert who will never eat again are not representative of oral cancer outcomes. Unlike Jen's experience, we found the nutritionist and dietitian services to be totally worthless. That also seems to be the common experience of all the posters on the GI tube forum and blenderized diet Yahoo group. The hospital should set up the delivery of the liquid "food" but it's just canned corn syrup solids and maltodetrin with faux fiber. I put up it with it only until it became clear I would not regain swallowing and now use my Vitamix to eat the same meals as my wife.
Just take it one day at a time and keep coming to OCF
Keep the faith
Charm

My dear brother is sitting in my living room watching TV with my husband. He has no tubes anywhere. The doctors took 22 lymph nodes and all were clear. I will update with more detail after I read the path report.

You are for sure a good sister. Keep up with the posts. I like to read them and find them interesting like I do all posts.

Thanks EzJim, but my husband and I owe everything we have to my brother. He was the one who insisted that my husband get an Agent Orange Physical and join the Agent Orange Registry. He nagged until my husband followed up with his application for disability. If it hadn't been for my DB, we would have had inadequate insurance for all the health problems my husband has due to Agent Orange. The co-pays alone would have bankrupted us.
Now it is my husband that is helping my brother with his appeal to the VA for recognition of oral cancer as Agent Orange related.

My brother has just left our house to drive four hours to his own home in Oklahoma. He will spend several days doing minor fixes and will be putting it on the market. After his house sells, he will move here and build a small home on our property.

He had gained about 2 pounds since his stay with us. He can manage smooth foods as well as rice and beans. His main meal is breakfast which is around 800 calories. Two packages of instant oatmeal cooked in one cup of heavy cream, three scrambled eggs, cranberry juice, and a high protein Boost.

For lunch he has soup made with home made chicken stock, onions, garlic, potatoes, heavy cream all smoothed with a stick blender. He has apple sauce and Boost.

Dinner is beans and beef stock (home made). Pureed peaches in heavy syrup and Boost.

Right now he is short on green vegetables but I will correct that when his mouth is more fully healed. I am going to make some split pea soup while he is back in Oklahoma and freeze it so he can take it back with him.

He will be returning to Arkansas for his follow up visit on April 12. We will find out where he will be receiving radiation. If there is a qualified place near his home, he will have radiation there. If not, he will stay with us and have radiation here. We will also be asking for a referral to a VA dentist specializing in oral cancer before radiation begins. I will also request a TSH test for him.

This board has been so helpful to me in caring for my brother and in preparing us for what is to come.

Thank you all.