| | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome Nate!!! Good luck and prayers for you that the scan shows marked improvement!!! Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Wishing you a good scan Nate!!!!
ChristineSCC 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  | | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Thanks for the recommendation, Nate. I will be holding you in my thoughts for a good scan result tomorrow. After all that you have been through, you need to catch a break somewhere! I like your attitude. I find that sometimes that anger stage of grief is so much easier to tolerate than the other stages. It's probably not good for the long-term, but it can get you through some tough spots. Also, I hope the tumour board can come up with a plan that is going to ravage that cancer instead of it ravaging you!
Be well,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Here's the deal...
Get to hospital this morning, check in, wait around for an hour and a half to find out the scheduled CT Scan was for my regular check-ups and not ordered by my doctor. I say OK, follow me lady and let's go ask the doc himself. I walk right into clinic with Korinne and nurse in tow moving a bit faster than them if ya can believe it, and sit right down like I own the place. First all the nurses are like " What tha!?! You're not supposed to be moving around, have you even been discharged yet?." I say, What it look like girlies?
Anywho, here comes the doc from around the corner in a laughing tone " What the hell are you doing here Nate, Your oncology appointment is at noon!" Just trying to see why ya got me down here for a CT Scan? Then nurse speaks up, he sends her on her way kindly and tells me go back to this room and he will be right there.
Needless to say the scan was an error and he said he has everything he needs for the tumor board on wedsenday evening. He jokes with Korinne and I a bit, removes the rest of my staples from my neck then I ask him if he has any pictures of surgery, he does! So we ewwwwwww and ahhhhhhhh over those for a bit then he gets down to businees. Nate, all crap aside, you are my number one priority right now and best patient I have ever had. We will figure this out and I am waiting on a few more phone calls. We may be doing more surgery, radiation this soon may noy be a good thing but lets see what the big wigs say and by the way we put a request in for a clinical trial at MD Anderson.
So, he shuffled us off after saying that the margins were slightly positive and he would like to use those words rather than poorly differentiated, in other words he almost got it all but is nervous it may try and travel my main artery for my tongue, the one that helps you swallow and move the booger. He thinks removing all that may be the answer but just hold tight, go get fed and see you friday morning.
We go to oncology, they dont have much to say yet either but speculation and the same thing about getting with the tumor board and my referral for a clinical trial at MD Anderson. They are concerned about radiation as well, that my jaw may just crumble away if they do more so soon within just one year. So we will see what happens, sounds to me like none of them want to be the ones to kill me, but I think I would rather them than the friggin' cancer. They did say again that no node involvement and the fact it is trying to comne back in thje same spot may help them pin point the bastard. Going to bed now, any experiences, advice, encouragement? Could use a good Braveheart moment right about now. I love you all and thanks for all the cards!!!!! It's go time friends...
Your Buddy,
Nate
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Tell them how you feel. Glad they're considering a bit more surgery! I know it's not optimal for you but it's an immediate situation! It will be Gobelin then they can treat any stragglers!! hugs! And good luck! The trial thing is awesome!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | Nate
Its awsome that you are soo positive! You will kick its arse no problem! stay like this cos you will come through it.
it Will be ok
love and prayers
jaynex
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Nate,
Read what you wrote above and realize you just had a Braveheart moment...you share that spirit. Charm's coined it on these forums as the "warrior spirit", which is very fitting and he certainly defines it.
When I think about that movie and the traits that defined William Wallace, defiant, courageous and unyielding come to mind. He would not bow to a tyrant, he did not fear death and he would not yield no matter what he faced.
If you remember the only time as an adult that he showed fear was before he was to be tortured and executed and it wasn't fear of death. He was afraid that he was not going to be strong enough to push past the pain to keep from asking for mercy. Bravery isn't the absence of fear but doing what has to be done in the presence of it.
What I see when I read your last post Nate is that you are there, especially when you say you'd rather die fighting then let the cancer kill you. You gave me chills and inspired me this morning brotha.
Rest up and do this thing.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | I have found my " WHY " Eric, and something wierd tells me this is what is supposed to happen. Korinne and I are finally going to make it official, we don't have the stress of the house over our head anymore, she is just a mile away, and I finally got that answer I was looking for about my career. I have hated my career for the last 7 years, ironically I remember puffing on a cig looking up at the sky about 2 years ago begging for a sign, begging for direction and how this can't be my life. Here we are today, a new path, new friends and new challenges. This cancer has removed me from that previous stress and in a sense made me feel free. Ive had several inspiring dreams, the kind where you wish you just stayed in ya know? I would like to hear someones theory on dreams, there is no pain there and I have had many gorgeous ones in the last few nights. Korinne says were just getting all the bad stuff out of the way so the rest of our life together is a beautiful one.
I have a big weekend ahead of me, got the big visit friday with the doctors and experts then my brother wheels me off to meet a good group of fighters at the UFC fan expo, wait til they see my scars eh? I just want to have fun, and give this my best shot for survival and quality of life. Again, I love you all and will throw my best judo at this son of a gun, I have too much still to do. Eric, thank you. Did you watch what I told you to? Rad Martinez - The Promise.
Your Buddy,
Nate " The Bull " H.
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: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Does that mean you and Korinne are getting married? I read and reread and you never said marriage...lol and what new career are you going to be doing? Love the fight in ya Nate! Ya Badazz!
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hey Nate! Dont you dare plan on giving up!!!!! You gotta get your mind wrapped around the future and beating this.
Im very happy to see you being your own advocate. Good job!!!! If you dont stand up for yourself its hard to get the proper attention that you need.
Last edited by ChristineB; 10-04-2011 01:50 PM.
ChristineSCC 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 | | |
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