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I’m Back #199104
09-21-2019 05:16 AM
09-21-2019 05:16 AM
Joined: Jul 2012
Posts: 3,262
NYC
P
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
PaulB  Offline OP
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,262
NYC
I was in a bad rehab center, which actually has good food and physical therapy, but my female aide decided to be abusive, and I wasn’t having that non-sense, so everyday was a battle! I should have reported her, but I thought I would win her over, but for whatever reason, you can’t change prejudices, and bad behavior overnight!

Anyway, I was in the rehab canter when my leg wound from the hip surgery opened and was bleeding. I was taken to the hospital ER, and 6 hours later, I saw the othopedic surgeon who gave an all clear, so about 8 hours later o returned to the nursing home. It was a mixture of blood and wound drainage.

The following day, when they transferred me to a wheelchair, and was waiting for physical therapy to pick me up, which wasn’t going to happen for another hour lol, I vomited, and out comes a big blood clot, which never happened before, and I was immediately brought back to ny bed where the doctor decided to call 911!

They kept me in the hospital, and needed 4 blood transfusions. Someone decided to put me in the
exclusive heart unit (yay) where it’s one on one care with a registered nurse. I couldn’t eat for a few day until an endoscopy was done a few days later to give me time to come off the blood thinners. The endoscopy came back all clear, so they were perplexed where the bleeding came from?

At the same time, my leg wound decided not to heal properly, so on Monday, I’m scheduled for a wound cleansing procedure in the OR. It’s been over a month, and the leg wound hasn’t healed!

My hematologist/oncologist team visit me daily! To overseen my care, but right now I can’t go to an outside radiology center to have a PET scan done!

I’m also being followed by infectious disease doctors who are a wonder father and daughter team. I saw the father 10 years ago when I first became sick, but now with his daughter who only sees in patients, the care is excellent, especially the daughter who doesn’t miss a trick!

So that’s about it, and as far as anyone knows I’m still cancer free as of January, 2019! I hope to post as often as I can!


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






Re: I’m Back [Re: PaulB] #199110
09-21-2019 02:55 PM
09-21-2019 02:55 PM
Joined: Jun 2007
Posts: 10,419
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,419
PA
What a rough time you have had lately!!! Im so sorry to hear all the details of what you have been thru. Hopefully your new place will work out and the staff will be better.

Best wishes with everything!!!


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
Re: I’m Back [Re: ChristineB] #199123
09-24-2019 03:51 PM
09-24-2019 03:51 PM
Joined: Jul 2012
Posts: 3,262
NYC
P
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
PaulB  Offline OP
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,262
NYC
Thank you, Christine!


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






Re: I’m Back [Re: PaulB] #199127
09-26-2019 01:47 PM
09-26-2019 01:47 PM
Joined: Aug 2018
Posts: 275
C
ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 275
waving hello!


Spouse of 57 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: I’m Back [Re: PaulB] #199254
10-15-2019 11:02 AM
10-15-2019 11:02 AM
Joined: Jul 2009
Posts: 1,399
Los Angeles
D
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
D

Joined: Jul 2009
Posts: 1,399
Los Angeles
Jeesh, Paul - what you've been through and are STILL after all these years! It would certainly break a lesser man and I've always admired your guts. I hope you get some relief soon. Glad the father-daughter team is so great. All good thoughts your way.

Re: I’m Back [Re: David2] #199259
10-16-2019 05:31 AM
10-16-2019 05:31 AM
Joined: Jul 2012
Posts: 3,262
NYC
P
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
PaulB  Offline OP
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,262
NYC
Thank you Connie and David!

I’m still here in the nursing home. I expect to be here until mid December when my insurance runs out, so I want to get up walking by then otherwise they charge you hundreds of dollars a day and it forces you to apply for Medicare, and permanent residency. I did that before about 10 years ago, so they didn’t get my SS. I owed them around $10,000, but I never paid it. I’ve been back to the same place five more times with no trouble, so they must get their moneys worth or use it as a write off.

Take care


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






Re: I’m Back [Re: PaulB] #199330
10-27-2019 11:43 AM
10-27-2019 11:43 AM
Joined: Apr 2016
Posts: 71
Massachusetts
M
msweet2995 Offline
Supporting Member (50+ posts)
msweet2995  Offline
Supporting Member (50+ posts)
M

Joined: Apr 2016
Posts: 71
Massachusetts
So sorry to hear about all you have gone through but you are truly a walking miracle. Take care and good luck on your current health issues. Michele


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
Re: I’m Back [Re: PaulB] #199343
10-29-2019 12:41 AM
10-29-2019 12:41 AM
Joined: Oct 2017
Posts: 23
M
Michael Young Offline
Member
Michael Young  Offline
Member
M

Joined: Oct 2017
Posts: 23
what a journey


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18
CT - NED 10/18
CT - NED 02/19
CT - NED 06/19
MRI H&N, X-ray chest - NED 10/2019

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