Well, I made an update in the after treatment section about my situation because I thought I was done.

I am not. It sucks, I am pissed, and pretty much facing this alone with 2 parents that are psychotic over the thought of losing me because my only sibling was killed 6 years ago and neither of us had any kids.

Is it too much for me to ask to outlive my parents? I think that that is a reasonable request from life. Either way, I am on tumor #3. At least this one is not in my tongue like the other 2 because if it was I don't think they could do anything for me. This one is in my lymph system. It sucks. I don't feel upbeat or thrilled about the new year if all it means is more pain and surgery. I want to go back to 2009 when life was different. Oh well.

I wrote you a reply on your other post. Im so sorry that you have to go thru this again. Ive had oral cancer 3 times in 3 years. I actually had 2 seperate tumors the first time so Ive now had 4 spots of cancer that were cured. It can be done, please dont give in to this.

I started to reply last nite, then realized I didn't have any words that could make this better. This truly does suck. Cancer sucks. Time now to get mad and get busy getting better.

One thing that might be helpful is if you had a brief chat with your parents and told them what YOU need from them. They ARE the parents. Tell them directly what you need...i.e..."I need you to come with me to _______" "I need you to remain positive and keep emotions appropriate to that exact moment". Maybe that will help you all deal with this better. They ARE the parents and while I sympathize strongly with your parents as having a child who is currently not 100% is every parent's fear - they ARE the parents and need to suck it up and support you. Tell them what YOU need from them. I'm sure they will rise to the challenge.

Keep posting. We do know how you feel, and I know emotionally this cancer fight seems more doable once treatment actually starts. Inactivity and waiting is the worst.

Donna

My parents are great- don't get me wrong, they have been there 100% for me through all of this. They moved my furniture into my house, kept up my yard all summer and my dad continues to shovel snow for me, they have been there for every appointment and surgery and are very loving and kind. The hard thing is that I have sort of stopped being an independent adult in their eyes and once more a very sick little kid, which is hard when you are used to having your own life.

I insisted that they take their vacation to Mexico despite my next surgery falling during that time for the reason that they have become so emeshed in my drama that they haven't had their own lives for a year now. I want them to go and enjoy themselves the best that they can and just try to get a break from this stuff with me. For once they are honoring my wishes which I am so grateful for! Caregivers get really tired and need a break too.

I'm going to go get some crispy cold sunshine, its something like 9 above outside here in beautiful northwest Montana- looks like a Christmas card.

Lisa,

I am so sorry to hear your news of the lymph node tumor...I know you must be devastated and your parents as well.

I think you need to take time to come to terms with this...give yourself permission to cry, be mad..whatever and then.....put your fighting clothes on and get busy with this next challenge.

I don't think things are hopeless and it would help all of us if you could give us a timeline in your signature so we can see how and when you were treated. I can't tell if you have had prior radiation or chemo treatment, etc.

On this New Year's Day...I send you hugs,

Deb

Lisa - There is definitely hope as you can see from above posts and from the very good suggestions. I can so empathize with your parents. The worst thing for a parent is the thought of losing a child and must be even more painful for your parents for having already lost a child. I was so devastated when we got my son's diagnosis, it was very difficult to even make a phone call to anyone without breaking down. At one point, when I couldn't stand the wait until the appointment with the Surgeon two weeks away, I had to make a call, and knowing I probably could not make myself understood on the phone I called my daughter to ask her to do it for me and had to leave a message. I was beside myself when my daughter-in-law (ex-wife of my son) called and she made the call for me! - and got the appointment for the next business day! Perhaps you could line up some other relative or friend for your parents to have some support. What helped me was having a friend go with me to my son's appointments. Also, you could suggest that they come here for their own support. Keeping busy is a big help, too so do line up some things for them to do. Donna is right - everything is more doable and easier once treatment starts. Let us know how things go.

Thanks you guys, I'll probably be posting a lot now, so much is going thru my head.
Here is my timeline:
9/09: Noticed lesion on tongue, unemployed, kept it quiet
2/10: Employed with insurance had biopsy which was positive for scc in my left lateral tongue
3/10: Surgery #1 to remove said tumor from left lateral tongue and several cancerous lymph nodes
4/10: begin 30 radiation treatments
6/10: finish said radiation treatments
7/10: biopsy reveals recurrence in same left lateral tongue
8/10: Surgery to remove left lateral tongue,with skin graft from left forearm for reconstruction, had trach and PEG tube placed
9/10: Return home with PEG tube
10/10: Return to work
11/10: Massive PEG tube infection lasting 3 weeks
12/10: I request one more PET scan (#3 for the year)- that 3 month mark makes me nervous
12/10: Recurrence of lymph tumor
12/10: Strange ear ache on right side
1/11: Surgery scheduled at UW in Seattle

Fun year doncha think???

Hi Lisa. I just wanted to let you know that I am so sorry this is happening to you. Cancer Sucks!!! Good luck with your upcoming surgery and I will keep you in my prayers.

I am right there with you! I found a mass on the right side in Oct. My cancer was on the left tonsil, they think this is mets because the tumor was so large it crossed the midline. I am having surg. probably Jan 20th. Modified radical neck dissection, tonsilectomy on right. Also laryngoscopy and biopsy of everything else in the mouth and throat while under anesthesia. My head is spinning! I have a great local support group and good friends and family. I am still nervous tho'

Its really hard not to be worried and nervous. I am eating zanax like candy just to keep from giving myself a heart attack from worry. Today I had another biopsy because I have a sinking feeling that the cancer has moved to the right side of my tongue and if that's the case, I am being told they will remove my tongue. My response was to say that they might as well just shoot me. How can I go through life at 40 as a mute- if there is even gonna be a life. Part of me thinks that I better start getting real about this being the end.

My surgeon said something wonderful to me today that I believe: "Two of the cruelest things that people can say to you when you have cancer is: "Have Faith" and "You just need a good attitude and you will beat this." He is right- both of those statements are such bullshit. Hear me out though, I realize that doesn't mean I should lay down and quit when I still have stuff they can chop off, but seriously- my attitude and faith weren't what made me sick, cancer did.

Lisa,

Once you get that "C" diagnosis, worry and stress are a part of your life. I had a recurrence a year ago which really added to my high anxiety level.

Have you gone for a second opinion? I saw 3 surgeons last year and got 4 different treatment options ranging from minor surgery to major surgery. Then it was up to me to decide what was the best treatment plan for me.

We are here for you!

Oh Lisa, my heart goes out to you. I have had it several times and got news yesterday that I have it again in my jaw. I don't have anything good to say but know we are all here for you and the people here are good people, so keep coming back. My thoughts are with you!

My heart goes out to you Lisa and you too Carol. You are both strong beautiful ladies inside and out who will fight through these treatments. I know recovery and rehab will be tough but I am praying that you both will pull through and beat this thing once and for all.

Sending love and strength to you both. I wish you both were not having to deal with this awful thing. I hope I can be a support to you.

Love and Kisses,

Kate

I can only echo everything Kate has written Lisa and Carol.
I will be thinking of you both.
Love
Gabriele

Lisa:
I can't add much that hasn't already been said except lot's of Thoughts, love, hope, prayers coming your way! Deb said it well, stand up tall and fight with every ounce of passion you have! I agree with you, no parent should outlive their children so JUST DON"T ALLOW IT... We're all here for you!
Warmest Regards,
Steve

I will have the biopsy results tomorrow. Today was a rough one, literally was awake all night until I finally got up and got dressed to go to work. No sleep and what turned out to be a 10 hour day was probably not very smart. All I want to do is go to bed and cry

Lisa,

I can, in no way, compare my experience as a caregiver to what you are currently facing. But I do know this:

When you are sleep deprived everything seems insurmountable. You have got to get some sleep somehow to have the will to fight and heal as well as have mental stability. I know you know this but sometimes I would feel so defeated and then realized that I had not slept well or it was late and I just needed to go to bed.

Hugs again,

Deb

Lisa, I wish I was in Montana right now to give you a big hug! I'm so sorry you have to go throught this again. I am also so sick of people telling me to stay positive. I realize they mean well, but sometimes it's hard and I just want someone to hug me and tell me it's ok to feel like crap. I'm pretty new to the cancer world and I friggin hate it. I saw one person write one time that they wouldn't change what they went through for anything because it made them a better person. I say B.S. if I had a choice I would change it in a second, I'm a good person without cancer. I hope things turn out GREAT for you!!! Shelly

I'm sorry for having to go thru this...but I have a question, is everybody or anybody mute from this? silenced forever? sure don't sound like it to me thru all these postings, so please don't think of it that way if this is going to be you're way of life after surgery. because you can still get your point(s) accross without speaking them verbally! and i would really like to know is everybody silenced through the surgeries they've had? Ron has had more than half his tongue removed, his voicebox is still intact(i understand if you had cancer in your voicebox you can not speak without a machine right?) but he can talk and bitch at me with no problem! he may not be able to pronounce certain letters but I and everybody he speaks to can understand him just fine. so I don't think you would be considered a mute from removal and transplant of a flap right? just one of those questions I have never seen really answered on how well everybody can speak, alot of you have even gone back to work so I can't see muteness here.
Good Luck and keep postive is that OK to say?

My speech is OK sometimes, and other times not so much. I notice that if I am tired my speech is worse - it's almost like a lisp. Also, when I am out in the dry air it seems to effect my speech as well. I have been back to work since November of 2009, and I communicate pretty well. Sometimes talking on the phone can be a problem.
I do agree with espressochick's observations. I friggin' hate my cancer, too! I had someone say that they looked upon their cancer as an adventure, but I look at it as a pain in the you know what!

My speech has gotten worse with each cancer. After the second one, cancer of the soft palate, I had an excellent speech teacher and we were really working on the nasely (sp) sound, well, I ended up with cancer again and I have not been back to her since. But she was helpful and we were making progress!

Lisa,

I wish I would have read this earlier. I was in Seattle and I could have been at the UW with you.. I was there on the 12th & again the 14th. Sorry I missed you and so sorry about the recurrence. Sending you a hug.. The UW has a great team and I know they will do everything they can for you. (I was treated at the UW)

I agree with everyone that cancer sucks and we all would be happier if it never Happened! Since it did we are all stuck with it. So we do our best with what we have. I am beginning to think that the questions is not if you have had cancer? but How many times have you had cancer? Could we be lucky in the lottery like this Oh of course not!
Thinking of you. Diane

Hope you are doing well Lisa...post often!