About 2 weeks post Tx I started to go online to find a support group and I found an important sounding BIG NAMED support group that was, like you said, small potatoes. I mean I would post and 2 or 3 days later, if I was lucky, I would get a response. Shortly afterwards, I get an e mail from someone big and famous on this site telling me to jump ship which I did and I am so thankful that I didn't continue to waste my time at the other site.

Michelle,

It's kind of funny. Last night I thought that I would not be coming back (at least for awhile). But sure enough, the second I turned on my computer, this is the first place I went. Although I haven't been very involved here, I can't help checking up on everyone. I have been reading all the posts for about two months and feel concerned about everyone. I can't even tell you how worried I was when Ezjim had his surgery last month. The days felt like weeks waiting for an update. Meanwhile, I have never even posted to him or received one from him but I was so concerned. Again, I felt the same way with your husband Dan. I told you this before, but I felt somewhat connected to you because of your age and having small children. You are dealing with so much with such grace and strength. It is very inspiring. You have inadvertently given me strength. I realize now that I need to face whatever comes my way head on. There is no turning back now. I am just going to take one day at a time.

I have learned so much from this forum. Not only about cancer, but about how to deal with it from the caregivers perspective. It really is a wonderful place.

Denise

Denise - your words are so very kind - thank you!!

It's a very "addictive" place. I feel like I go through each day and I am blessed to encounter many people who care about my family and who are praying for us, etc. but none of them "really" get it. I don't think they can imagine how hard it (cancer) is to begin with. Then those that have cancer experience don't realize how much harder head & neck cancer's are. When I come here I feel lifted up, validated, understood, helped, etc.

I hope you stay with us and post when you feel like it. When we don't hear from you we'll know your watching and cheering us on!!

I'm sure you've found lots of data about your mom's type of cancer, but if you need any help finding anything let me know. I honestly think by now I have read everything ever printed about salivary gland malignancies. If I had access to things like linking hub and others that you must have to be a doc to get to - I would be fully "schooled" on the subject.

Good Morning All!
I can appreciate your concerns having gone through the same with my mom, and still continue to do so at times. My mom recently broke down into tears and said she never realized how "vain" she was. It broke my heart because she is not a vain person at all. Her cousin happened to call the next day and I told her about my conversation with mom about how she looks and she said, "THAT'S TERRIFIC!!" I thought, wow...she's going insane...but then she said to me that the reason she felt this way was because mom still cared, that she still has the fight in her! She had such a positive outlook on everything I told her. Her spin on this was a gift to me that I was able to relate it back to my mom and it gave her a boost that she really needed. One bit of advice that I would like to share is that you have had or are having a ND, get lymphedema therapy set up so that you can start immediately, as soon as the doctor says it's ok to do so. I wish that we would have begun sooner, but it is what it is, and mom is, as always, being so good about doing what she needs to do. Don't misunderstand me, if you read back on some of my older posts you'll see what a mule she was about some things....but that mule in her has helped her endure everything.
Hope today is a better day for everyone!
Donna

Hi Donna- I wish sometimes that I was stubborn. My husband is and I don't think he would have gotten through what he has if he was as wishy washy as I am. There is almost a beauty to people who go through this horrible experience. I hope you are taking care of yourself also.
Sue

Sue,

I'm not sure I would agree with beauty thing but I definitely agree with the horrible experience thing.

I have trouble with my scars. My jaw does not move with my face since part of it is missing. I still try to talk with the best of um. I worry sometimes about my job because of the way that I look. But,this is how I look so I just go on. I am mad some days because they did not find any cancer in my jawbone but took it anyway. Then, the next day I am so grateful that they did and that I am even alive. It is like Jeckle and Hyde in my head. You cannot cover the scars on your face like scars on other parts of your body. It is hard to look in the mirror sometimes, but it is good to be alive.
Debbie

By beauty I meant the grace with which some people continue on. I see the suffering and there is beauty in the strengh that my husband shows.
Sue

Debbie,
Thank you so much for your honesty regarding your scars. Tomorrow is my moms appt w/ the dr and surgery is scheduled for Wed. I have a feeling that the dr will tell us tomorrow that he wants to remove her jaw or some of it. I'm not sure yet but that seems like the next logical place to go. My mom, as well as myself, are skeptical to proceed with the surgery because the margins from her initial surgery were clear although not clear enough for the dr I guess. Because now he wants to take more. In your opinion, if your dr didn't perform surgery on your jaw do you think it would have spread there anyway? I know each case is extremely different, but I am just curious. Thank you so much for posting and I am sorry that you have had to deal with this all this.

Denise,
I honestly don't know if it would have spread. I suspect it would have. But, I had to do whatever I could to give myself the best chance of coming out of this. mY ent said that they used to just scrape the bone down somewhat but they had better luck with removal. I am still not out of the woods yet. I just am Ok for now, which is all we have. I hate that your MOm has to make this decision. I wish I had gotten some more opinions. I think she should at least weigh all of her options. I have a friend who had the same surgerry as mine and she has had no problems at all.
So, it is very individual I think. Some days I can't stand this and somedays I am scared I will get it again.
Take care- I wish I could help more.
Debbie