| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | 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 | 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!!! 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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
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: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 |
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | 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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | Joined: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2016 Posts: 75 Likes: 2 | 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
| | | | Joined: Oct 2017 Posts: 36 Likes: 2 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2017 Posts: 36 Likes: 2 |
T4aN2cM0 left tongue SCC 10/17 Moderately differentiated SCC PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17 Perineural invasion present Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18 PET - NED 05/18 CT - NED 07/18, 10/18 CT - NED 02/19, 06/19 MRI H&N, X-ray chest - NED 10/19 MRI H&N NED 05/20 CT - NED 10/20 MRI - NED 04/21 CT - NED 10/21 CT - NED 4/22.10/22 CBCT - NED 10/22
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