Hey guys (and girls). I'm Garrett. I'm a 24 year old male living in the Philadelphia, PA area. I was diagnosed with undiff. sarcoma on Sept. 29th, 2011. Not sure what stage I was. Although, due to ignorance on mine (and my doctors) parts I think I've had cancer much longer. Maybe since around age 17. For a while, they thought I had a large hemangioma (benign vascular tumor) in my tongue.
Since my cancer diagnosis, I've gone thru 5 cycles of chemotherapy as well as 35 IMRT sessions. On 9/7/12 (about 3 weeks ago) I underwent a near total glossectomy. I still have my tongue base along with a free flap reconstruction from my left leg.
I had a PEG tube (still present, obviously) and a tracheotomy (removed, but healing - 1 week today).
Upon my follow up I was told the marginal biopsies came up negative. So at the moment, I'm cancer free from what I understand.
I can swallow liquids, I'm trying to ween myself off the PEG tube. They expect me to drink 7 ensure/boosts per day. Yesterday I was able to drink 1 entire one for the first time... That made me kinda happy.
My speech is not great, but I'm definitely understandable.I have complete confidence in working on "by myself". I have great family and friends to talk to all the time.
I have come here for support and advice. They say a lot of people in my type of situation don't really end up chewing stuff again and remain on a mostly liquid diet.
I was somewhat of an athlete before and Im having some concerns about getting the proper nutrition to fuel my body as time goes on and I hopefully return to a normal lifestyle.
I know it's only be 3 weeks, but I'd like to hear what some of you near total glossectomy patients are eating... if there's anyone else out there?!?!
Any thoughts are greatly appreciated.