| | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | It was brutal getting awake intubation, 16 doctors, residents, nurses, and med students all in one crowded room. My ENT pulled rank with her status as senior teacher and former top hospital doc to insist on personally be there. Interventional radiology was miffed since their standard practice is to do a traech on patients like me with major trismus, plus swollen tongue and constricted airway. At one point 5 doctors were shouting over each other: no, too deep; watch out, move to the left;now right to the poor anesthesiologist while the ENT team is shouting to me: good job, you can do this, Breathe , almost there . Then a triumphant shout from all:we did it, knock him out now.
What a nice way to go under. 3 hours later, I wake up in recovery , minutes after being done. IR docs stunned I am already conscious and cognizant. (my past as a hippie leaves me active where others are comatose ) and I asked them to speak up in their briefing to the recovery nurse.
They had to embolize the entire superior thyroid artery (google it, great pix-)
It was leaking like a sieve. Big relief because the surgery to do this very dangerous and this arteroigram is very a safe. Still wired on adrenaline despite 3 morphine shots later but I should be able to sleep soon.
Bev is so relieved. Now to tackle the nausea and vomiting issues which have vanished with nothing to eat or drink in 2 full days but plagued me all month. I got my second wind when I saw that post where a chemo doc said to not follow the radiologist oncologist treatment plan.
Blessings
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | love you brotha, you're a beast
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 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Charm!
I'm sorry that I had no idea you were having these issues. I guess I haven't been on he boards as much as I should, just a lot going around this house this winter.
Nonetheless, I am so happy and relieved that the procedure was a success. I hope that there is nothing else to tackle at this point, except LIVING!
I love seeing posts/getting posts from you. You are an inspiration to me and have such a kind, loving heart. You always seem to make me feel better, no matter what is going on.
I wish for you a speedy recovery so you and Bev can get past this "blip" on the radar.
Love,
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Well done on the awake intubation Charm. Having been involved in a few myself I do know how difficult they are from the patients perspective. Kris too has had to enure this.
I just knew that all would be well for you - a skilled team at work. Hurrah!
Now, just get on with your recovery. One day at a time. I know it gets more difficult each time but you will eventually get there. Life sure is worth it.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Why must everything always have to be so difficult? So sorry to hear you went thru so much but happy to read these words. That means you are ok! Congrats on a successful surgery!!!
Best wishes for a speedy recovery!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | What GREAT news!!! An AWAKE Intubation?!!! I knew you were a pretty tough guy but this is really above and beyond! (I did google it). Whew! glad that's over and surgery was successful. Now we can all breathe a little easier. Life is Good! Now get some R & R & R (Rest and Recover and Relaxation).
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Wow, intubation while awake! You are awesome! True to your form, you were posting in recovery! What a guy! So happy that you are on the mend.
Anita (71)
CG to husband, Clark, 82,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22, 6/25
PEG 7/21
Botox injections
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Charm,
Kickin' ass and taking names - love it! You're a rockstar.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Charm, you are just plain BADASS! Nothing more, nothing less. Glad you made it through another "event". Inspiration flooding this ole hippie's heart!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Glad you are recovering. I needed to be intubated awake a few times after my first radiation, due to the trismus, but the injection they gave me knocked me out.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | you ARE the tuffest frack here!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Charm is like the Energizer Bunny - no matter what, he just keeps on going, and going, and going! He also has one of the best attitudes of anyone on this Forum - GO CHARM, GO!
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Every time that I was intubated I was well and truly under and could not imagine being awake through it. You are amazing  I am so glad to hear the surgery was successful. I wish that all the other issues you are suffering disappear soon and that you have a speedy recovery. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Wow Thanks everyone. It turns out I never could get to sleep until 4 pm yesterday after I got home after demanding to be discharged from the hospital. It was simply impossible to sleep in the hospital. I had doctors, nurses, the patient advocate, executives all coming almost every hour since there was also an incident before the surgery when at midnight, a "confused" patient who was wandering the halls and shouting for bacon and eggs for breakfast was being coddled by sympathetic nurses. He began to start going into and out of other patients rooms claiming they were all his rooms, that he had paid for the entire hospital and they all worked for him and they better not forget it. The nurses would chase after him but never restrained him. They caught up with him right outside my door before he came in. Since it turns out I was the one and only room he had not barged into, he became fixated on entering my room. He was truly crazy and deranged and at 1 am, he burst out of his room , right next to mine, and pushed open my door and rushed in. What he did not know was that unlike all the other patients who had IVs and EKG leads and were unable to move out of the bed, I had demanded the night nurse remove my IV, take off my restraining compression leggings, and disconnect the EKG leads. My story, and I am sticking to it, is that I politely and calmly pointed out the error of his ways and it was just a coincidence that all 6 foot two inches of him suddenly bounced out of the room and he landed sprawled in the corridor. He started shouting he had a pistol in his room and he would get it and shoot me dead. At that point, I called security and they moved him off the floor. Again, I never touched him  He just lost his balance. But boy did the hospital send in enough people to apologize and make sure I was okay. True story. EricS can guess the oratorical approach I used. so yes I was wired up beyond belief Charm
Last edited by Charm2017; 03-29-2013 04:48 AM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2006 Posts: 757 Likes: 2 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 757 Likes: 2 | Charm,
I'm glad you are home where you can get some sleep and heal under the loving care of Bev! You surely had an medical adventure the past few days, and some unneeded "entertainment" thanks to the gentleman in the room next door.
Take care!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 8 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 8 | The other guy should have known better than to pick on Charm! So amazing that you can see the humor in an annoying and potentially frightening episode. Hopefully the rest of your recovery will be less dramatic
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Need I reiterate?
Kickin' ass and taking names (metaphorically speaking of course)...
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Oh My God. I am sitting here shaking my head - I can't imagine someone barging into my room like that, but if they did I would no doubt be frantically hitting some button - not taking care of business myself! Well done.
I am THRILLED to see you posting so vigorously. Are you sure you should be at home?? Mind you - as I type that I am thinking Hospital isn't a great place for you anyway.
I will give thanks today for your successful surgery. I need you to be here. Now get your ass back to bed and get some sleep!! While babies grow when they sleep - patients recover when they sleep. (Bev told me to say that!)
Many Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Holy crap Charm!!! I can't believe he was restrained LONG before all that had to happen!!
Glad to see all is well and you're still feisty!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Wow, Charm!! I am just blown away by your hospital adventure! I'm sure all the other patients are glad you took the approach you did! So glad you are home. You are one tough cookie and I'm so glad you are. Hope you get some much needed rest, now.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | So glad you kicked butt... Now heal and go home. 💜
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
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