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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Oh Nate!!!! I feel about 2 inches tall right now for missing your post. I AM SO SORRY!!!!!! Once in a great while I miss an important post, it gets buried under all the rest. You got me on FB as your pal, speak up, send me a private message either here on on FB saying one word "HELP". Im not that far away. Please forgive me! You know I wouldnt ever turn my back on anyone, especially you.

So you are afraid, that is perfectly understandable!!! We all have such a fear of having a recurrence. It is always in the backs of our minds with every little twitch inside our mouths. After the traumatic experience of being bolted down to that table and left alone in the room to get the crap zapped out of us, then struggling day by day for weeks to get well, no wonder we all get scared.

I will share something I learned when I went for the biopsy before I was told I had cancer for a third time. When they told me there was something that didnt look right inside my mouth and asked me if I wanted to do the biopsy now or to wait, I said do it now. It was at that moment I told myself thats it, cancer or no cancer Im going to go out and enjoy my life. I may not have a tomorrow very soon so I better make the most of what time I do have. A couple days later I went on a 25 mile bike ride with my son. Why put it off worrying about 'what if'. I figured I have my old age to be sick and sitting around worrying isnt doing me or anyone else any good. Its not going to change the test results. I am so proud of myself for taking that bike ride, its something both my son and I will always remember doing. Even though Im so much better, I doubt if I would ever be able to do that 25 mile ride again. So you see, you just never know what the future holds. Go out and enjoy yourself, make some memories and face the beast without having any regrets.

Now please be practical and put off making any important treatment decision until you get the results. If I had seen your original post, I would have told you get your butt back to that ENT. Its only money. Dont worry about spending the co-pay. I know easier said than done but you will always have bills for the rest of your life. Everyone is in debt in one way or another. Im very glad to see you went back and got the biopsy done. Im hoping and praying its nothing more than scar tissue.

IF and you know its a big IF right now, it is back then you have done far harder treatments before. You can get thru this again! Dont count yourself out before the game is even played. Please be patient and wait this out, stay busy so you keep your mind off the "what if's".

Hang in there buddy!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2010
Posts: 224
Gold Member (200+ posts)
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Joined: May 2010
Posts: 224
Nate~ my brother from another mother(and father) smile.
We chatted on fb. I would just settle. Docs say and do things all the time that used to upset me, but I don't let it get to me anymore.
I know you are at a hard point. I was there with all of my scans. If you remember that you have had nothing but clear scans, it should help you relax a bit.

I know how appealing drugs can be at times. Countless times have I thought about going back to hanging out with mary, but everytime i get close to it, I can't even think about the pain I would be in when I go to inhale it...even cold air kills my mouth and throat, so no way, no matter how much I want to or not, I will ever get to hang out with mary and be close friends with her again unless I eat her, and well, that just sounds wrong, lol hehe.
Hope that last bit at least made you smile a little, smile.

Like I said on fb...we're like family now, and i have much love and respect for you! We are part of the elite youngin group and i will always be there for you!

Have you thought about going to see someone to get something to help with the depression? I hate seeing a therapist and paying to just talk to someone when I can do that for free with my soon to be hubby, but it is proving to help me so far. And I hate pills, but they almost have me on a good concoction that almost has me back to "normal" without feeling like a zombie.

It's pretty tough when you have friends and loved ones around you that smoke/drink/do drugs and other things you may want to do that you really shouldn't due to cancer crap...but you are a very strong guy! Heck...you did something I would have never been able to do...video blogs during treatment!

I am so proud to be able to call you a friend and that you are doing so well, regardless of the OCD stuff. I would maybe say that you should ask about seeing someone to help you with the what sounds like anxiety and depression issues that are kind of running the show that is your life right now! Maybe see if there is a cancer support group or at least talk to someone about an anxiety med that you can take on an as needed basis when your anxiety gets super bad. I have had Klonipin in my med cabinet since surgery and it's come in handy a few times! I am now on buspar which has helped me greatly with my anxiety, but now need to talk to them about the depression or coping issues.

No one is perfect, and we all get scared. What matters is how much we let that scare control our lives! Stay strong. No matter what the news...I am here for you as I am sure many others are! We love ya Rat Fink! smile


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
Thank's guys! I really do appreciate everything, I went to the hospital yesterday as the squeeky wheel with no appointment because through the county is impossible to get one any other way. I went by myself ( mistake ) I am alot more emotional and mean without my mama there, and I broke down outside the office after the biopsy, got so mad I told them f*%k their prescription! I will get better sh*t! All of this was totally out of character for me, and I barely made it to the car which is where I sat for an extended conversation with my mom. As I told her " Mom, all I am trying to do is move further away, play music which I put off for so many years for my habits, and see my nephew grow up. " She cried, I cried, because it was literally this time last year I was being scheduled for surgery.

We had a huge festival to play this saturday evening, and on top of all this I got a message saying it was postponed til a later date, even bigger bummer. Like I told my councelor, music is my greatest escape as is my nephews " grown man " syndrome, lol, he's 4. All those feelings came back, and I was just so damn depressed that my new life was about to be taken away, a new life I have worked hard for, one which I dont care what others think about me anymore or let people who used to intimidate me turn into puppies. Fact of the matter is, I went in thinking they would say the same ol' thing " Oh Nathan, we love ya, but you gotta go, we need to see sick people. "

He looked at the cut, messed with it and said ok Nathan...The only way we can tell is by CT scan which you had 5 weeks ago, so that is out or a biopsy. He saw my face drop, then said don't you get down on me now, it is the only way and I want to help you sleep better at night. All that ran through my mind was what the oral surgeon said last year " Oh wow, this is nothing, it doesnt bleed nor look like cancer, youll be fine. " Well we all know the results of that one.

I took the day off from work, borrowing my brothers computer, so I will be in and out. No way I could face my Hitler boss today with my mindset, I would punch him in his face. Thank's again everyone, Anne, Julie, Beth, Eric, Christine....You are all the councelors I need, at least I wont argue with you guys. I argue with therapists and councelors, maybe you guys wont want to meet me one day. LOL, I am the most stubborn hard headed ass in the southern region possibly.

P.S.- Not two weeks ago a friend of mine way way up North requested my band's music for a documentary called The Dragonfly. Please like " The Dragonfly " on facebook, it is going to be a wonderful film about cancer survivors and people going through it. Please just hit the silly like button, the film maker is a cancer survivor as well.

Love you Guys/and Ladies
Nathan


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Nate - I posted this link in the Friends forum, but please go see this. It will help you know how much we care about YOU!
http://www.azlyrics.com/lyrics/martinamcbride/imgonnaloveyouthroughit.html


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Jan 2009
Posts: 476
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Jan 2009
Posts: 476
Hi Nate. Christine, Eric and the others have given you some really good advise. I know it is easier said than done to not go to the "dark side" and start playing the what-if game but PLEASE try and keep yourself busy and don't go there.

I have always felt facing things in my life that the not knowing is always the hard part. Once you have the information you can make the decisions that need to be made. The fact that the scan was clear is an excellent sign. And be thankful that they did the biopsy because if they didn't then you would be driving yourself crazy with the not knowing.

You are one strong young man and you WILL GET THROUGH THIS. Congratulations on being nicotine free for a year, major accomplishment. I pray you hear the "all clear" next Wednesday. Either way we are all here for you! Hugs, Wanda


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
Anne, that is so wonderful...We had a successful concert last month and all these people who never met me kept approaching me about my arm bands...I wear 3 of them, F@%K CANCER , I <3 Boobies (keepabreastfoundation) and the final one that says OBSESSED. They commented, gave them my story and it made me feel guilty because they seemed to like my band that much more lol. I must say that I, besides the rest of the band put on one hell of a performance. And as I said, I feel I finally found something with a good group of guys, and watching my nephew play ball, this just came as a huge blow.

I went from The Beatles song- Flying to now a Dinosaur Jr. song called Out There. I really thing Out There should be our OCF anthem, it is an amazing song. You are all so inspirational, and all I want is to give you guys good news next week because I am working so hard to get together a huge concert for november, and if I get sick again that may not happen. I know I am in the minority here for alot of the different music I listen to, and my pro-marijuana views, but music has always been such an escape for me, thanks for the lyrics...made me cry. I hope this is all these student doctors led by one badass doctor just being thorough or excited about cutting me. Love you guys, and if you get a chance tell me what you think of my now oldie but goodie new favorite song. http://www.youtube.com/watch?v=Z81LcFhmqP4

Love you guys,
Nathan


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Nate, Im happy to see a more positive post today. Keep trying to have a positive attitude. It really will help you feel better!!! Congrats on your musical success!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2007
Posts: 595
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jun 2007
Posts: 595
Hang tuff and stay calm and just wait fot the results, always think positive!!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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