Hey Friends,
It has been confirmed, I am officially back at it...I am disappointed, Doctor is disapointed but said he is ready to go and will hold no punches. The suspicious spot came up about a week after my ALL CEAR ct/scan. For a while in between scans I would bust the door down, make someone look at every little detail going on in my mouth. Besides the the difficulty of coping with all that happened and given an all clear each time, I was driving everyone crazy. I found a new diagnosis in my life, OCD ( put him on drugs ). Got a wristband froma co-worker that said OBSESSED, I found something better than the news, yes I did , my mouth.
My mouth has became a constant live broadcast since the day I could get my mouth movement going, hey I love to talk. I enjoyed watching as the radiation sores went away, then the thrush ( my kisses back from my fiancee and puppies! ) because of such horrible breath! As I look with my flashlight in the mirror, tongue cocked to the right and lights off I see something. A very, very small white patch next to a scar; hmmm,what the hell is that? Well I go to the doctor next monday which I believe was July 9th and got that ALL CLEAR scan again and three of them looked in my mouth, I told them about that spot, they recognized and none were worried. About 2 weeks goes by, I play a huge art show with my new band and by that monday I notice a slit in the morning as I am getting ready for work. I think to myself, that is not right, but looks like a change, I know this from 50+ flashlight looks a day.
I have my fiancee look, she is in no way worried and says looks healthy just as the doctors say, just looks like a line maybe the radiation has caused. Another week goes by, I was out eating with some friends and just felt an uncomfortableness, not necessarily a pain or irritation. But hey, I figure must be the fajitas or the Negro Modelo but when get home the line has become a split. Korinne calls that monday, count is being assholes and we cant get an appointment. I worried my mom, and everyone else around me because now this line is a split and I swear I am not crazy. I honestly was kind of tired messing with the doctors, and looking n my mouth, scheduled for a new councelor and I am all this is me, I caused this line by looking to damn much. But I finally decided to go, walk in the ENT when the nurse walked out, acted like I owned thhe place and had one of the head doctors students look. He looked concerned, finally grabbed the partner of the head doctor and he says " Biopsy now, I dont like the we it looks inside of there. " Now this week,yesterday I am officially going back to war.
My doctor is fast tracking surgery and grabbing a colleage from MD Anderson whom specializes in forearm flaps. They dont know for sure but are thinking eith all or most of my tongue is gonna have to go. I am sure most of you know me, sorry about all the ranting at the beginning of this but I am trying ok. I am trying to get out of the mental mess I am and need questions and suggestions from you guys soon.
They ordered the CT for Sept 9th, and then the surgery consultation for Sept. 12th. They havent said yet, because I gather records todey but he says radiation is out of the question for the moment because of healing issues. He wants to do a free flap from my arm, depending on what they see in my neck and tongure then will know how much to take and what they may do. The pain is at minimal right now, nothing close to what and how it felt last year. Back to what I was saying, My obsession with this cancer and my mouth hopefully saved my life. I just had an ALL CLEAR scan, and then this popped out of no where,I turn 29 on September 12th, my surgergy consultation. It has now almost been a year since surgery and over a year I have been physically,emotionally, and mentally fighting this disease. I am begging for your support and suggestions.
Your Friend,
Nathan
P.S.-I believe in my ENT team, 2 of them are from MD Anderson and the others MEMORIAL. I am in the county system but hope they make the right decisions. But I need to know more of what to ask, that's where you guys come in. Last time was left neck dissection, left tongue partial glossectomy 49 lymph nodes 2 positive.
