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.
