Hi everyone

I just found you last night, I have some questions, some fears, and - hopefully - some helpful suggestions and encouragement.

I was diagnosed in late Jan 2006, SCC right underside of tongue. Had 1/3 of tongue removed in March 2006. Dr said "Most Drs would send you for radiation now, but I'm not going to. I know I got it all". Less than 6 weeks later it was back and really bad. This time he said that he couldn't remove any more of my tongue, wrote me off as a loss, and sent me to the oncology radiologist. (Guess you can tell he was no longer my "new best friend".) This rad Dr said that I needed surgery, radiation, and probably chemo, and that he needed to get me in to Shands in Gainesville, as they couldn't handle it here.

At Shands I met my head & neck cancer "team". I spent a morning being examined by each Dr on the team, along with his bevy of residents. They met and decided the best course for me, and saw me again in the afternoon with their recommended plan of action, along with a ton of hope for good measure.

In Aug 2006 I had surgery removing more of my tongue, all of my teeth, the floor of my mouth and part of my jaw. Sep 2006 I started radiation 2 X a day, and weekly chemo IVs. This went on until Oct 12th (my 57th birthday). My rad Dr (head of my "team") wanted to continue another 3 days, but I had developed a severe complication. My colin had become twisted (probably lack of food to process had something to do with it) and I had emergency surgery. They found gangrene. They say I was moments from death that day.

I spent a month in the hospital. I was underweight, undernourished, had almost no immunity to anything, and my blood was a mess. When I finally got home I could barely stand up. I continued to lose weight. My insides got twisted again and I had 2 more surgeries. In Jan 2007 I weighed 60 lbs. (I was 5'6" and 119 lbs when all this started.) I wasn't the only one thinking it was over.

Today I'm 94 lbs (but only 5'4"), some days are better than others, but I'm up and around and enjoying my life immensely. Sure, there are life-changes and challenges (like eating, sleeping, walking, talking, and breathing ), but theyre worth it. And my PET in July showed no cancer anywhere! On Oct 12th this year it'll be 2 years since my last treatment. Happy birthday to me. It's the most fantistic gift I could hope for.

Next...surgery so I can have some teeth! They're working on it. Boy do I have questions!

Anyway, that's my story so far. I wish I had found you earlier. I know I'll mention your site on my next trip to see my angels at Shands next month.

Welcome Lani, there are a lot of great people on this site.

Raymond

Hi and Welcome Lani,
You have certainly had a hard 2 years. My Dx was a little later than yours and I also did not find this site until 1 year later.
No doubt you have questions and there are lots of people here who can help.
Gabriele

Thank you Gabe, and also Raymond, for the welcome. I'm still mostly getting to know the site and the people in it. While I was in treatment I was mostly away from family and friends, but was surrounded by other people going through the same thing. I've missed their support and comradship these past 2 years. As much as my family loves me and tries to understand, they just can't fill that void.

Hi Lani

Welcome to OCF. Too bad you have had such a difficult time. Its good you have found OCF to help with your unanswered questions. Lots of well informed people who have been there can help you. You are now part of the OCF family. We do understand.

Thank you, Christine. My Dr says that I had a really bad, aggressive cancer, and they almost lost me, but that, since it's been almost 2 years, I'm 90% in the clear now. "If it was going to come back, it should have by now." Of course he's still keeping a close eye on me. He IS my Angel.

I call myself "The Aftermath" - what's left after they killed my cancer - and my thyroid, and my salivary glands, and ......

My spirits are high - so much better than a year+ ago, and I do try to keep my sense of humor. At least I don't have to work anymore. I was really looking forward to retirement already and now I can garden, make pottery, read, etc to my heart's content.

Lani

re very good friends now and I would let him do anything to or for me and this OC. He tried to get me to listen to him after I had the tongue surgery and neck dissection and even called my house and sent regitered letters. I go for a scope in the morning at 6:30 for Barretts Esophagus check. Nothing new seeing as I had surgery on it in 1995. LOL Life is interesting for sure, but I'll take it anyway I can and smile. Good luck to you and keep smiling, it confuses a lot of people. LOL

I had the tongue surgery on Aug 3rd 2008 and the Dr told me I didn't need rads or chemo. I knew I still had it a couple of weeks later but it was a job convincing him. He finally did some biopsies again and agreed I had OC again . I went lpocal for what I needed next at Wheeling Hospital in Wheeling, WVa. It's a comprehensive Cancer Unit and very good. This is where the Dr is that I should have listened to. I needed the Rads and Chemo but 1st the teeth had to go. Jan 17th the teeth went and on the 1st of Feb the Rads and chemo were started using high doses of both. Then on Feb 29th I was taken to surgery and put into LaLaLand and I knew I would be out of it for a few days and in isolation. THey went thru from under my chin and put the implants into my tongue and then a Trip to X-Ray to be sure they were in the right area. Back to surgery and the radiation put into them. I had to be difficult and wouldn't come to. LOL I came to and the Dr was sitting by my bed and just Smiled and said, "Jim you are my miracle patient". They were getting me ready to transfer to rest home until I came around and recovered. WHEW..I lost 70 lbs and am still down 60 of them . I keep asking about dentures and get told to not hurry it because I could mess things up. If th=at Dr says it, I sure will listen to him like I should have from the get go. Dr Pollock is the best for my money. And such a caring Dr. He will call just to chewck on you and it might be at 10PM. LOL !st part last Man I'm good and laughing my skinny butt off for this screwed up post.

Jim,

I do keep laughing, but smiling is a problem. I open my mouth and my lips get sucked inward - scare small children, I fear . So I have this Mona-Lisa-smile-thing going on. If I get my teeth, maybe I can smile big again? Doc says top teeth are no problem, except that if I get top without bottoms, it might look worse. It will make my bottom lip going in more pronounced. So I guess it's all or nothing. Oh well, that mysterious smile thing's worked OK for old Mona. I could always just save those uppers for mealtime. I'll be seeing the surgeon at Shands in October. We'll see what he says he can do (or not) and if it's too risky to try (or not).

Lani

At least you can have some fun at Halloween!