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Malka Offline OP
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'Twas a Newcomb professor who accused me of learning to write in the dark. My husband once saw me signing checks and said "I gave you my name and that's what you did with it??"
Another instructor told me my spelling was subnormal. I would have said abnormal. When I was in school there were no learning disabled. I never understood when teachers would say if you don't know a word, look it up in the dictionary. I knew the words, all the Latin, Greek, Old English, Old French, Germanic roots, prefixes and suffixes and their meaning better than any of the other students and scored in the top 3% in College Boards. I just sometimes write letters in the wrong sequence and could never spell out loud. I also have the same problem with numbers. Differential calculus was much easier for me than simple multiplication tables. I still have trouble remembering 6x7 and 6x8. My older sister told me she tried to help me and I never could get those.
One of my son's tells me that my singing is against the Geneva Conventions and the boys would tell their friends "Watch out, my Mom will sing at you." That was a worse threat than "my Dad will get your Dad."

BUT: As one little boy I know said as he pointed upward "Don't you know that no one is perfect except Him?"

Most important is to have a sense of humor about ourselves and our situation, to have the ability to see that even though we have pain and very real problems there is help - if not today for ourselves then hopefuly someday for others, to acknowledge that there is a reason for everything even though we don't understand or like why things happen. I believe that we must have a deep faith in the Creator who knows what He is doing and who does listen to our pleas even though we don't always understand His answers.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka,

I haven't been around for a few days, but I was thinking of you the whole time. I got a short report from Colleen via email.

I am so sorry to hear about the awful ordeal you went through in the hospital. There's no excuse for what happened.

I'm glad your home and on the road to recovery. I hope you are feeling much better by the time you read this post.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Malka Offline OP
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On the road to better,
We saw both surgeons yesterday and I will go back to the Plastic surgeon next week and the ENT the week after. So far I still have the Frankenstein stiches on my face and neck, am using a walker and eating only soft foods. The plastic surgeon told me to wrap an Ace bandage around my face to reduce the swelling. I asked him "like a nun?" and he said "yes." My d-i-l brought one over this afternoon and I can't figure it out. Tomorrow I see the Prothodontist and will ask him.
I conquored the stairs going both up and down sitting. When I get upstairs I just roll over on my side and get up on the knee from the good leg. To go down, I roll to the top of the stairs on my computer chair, someone holds it and I ease down to my knee, sit down and bump down the stairs. I really don't want to do this more than once a day as I am not an exercise person and it is tiring. Also, I need help at the top and someone has to bring the walker up and down for me.
I now do not need the boot 24 hr, mostly for walking. I am afraid to sleep with it off but am enjoying the "freedom" from it during the time when I am not walking. The Plastic Surgeon told me to keep the leg elevated as much as possible and OKed putting on a low quarter sock. The problem with that is that the velcro adjustments stick to it. oh, well - "you have to suffer to be beautiful."


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Sounds great, relatively speaking of course.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I liked your Frankensetin comment....

After my radical neck dissection my kids called me Frankendaddy.


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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Keep those inflatable booties powered up when you can -- The leg where they harvested the free flap material has a lot of fluid buildup (So far, they've taken ten of the 60cc syringes-full out of there!)


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Malka Offline OP
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Pete,
The boot is a stiff one piece with molded foot and sides. The edema is in my foot and seems to have gone down a little. Yesterday the Dr.told me I didn't need it on 24 hr and should try to keep the leg elevated as much as possible. I left a question to his nurse to find out if a regular stiff ankle brace and a croc would suffice. It seems to me that if all I am doing is going a few yards to the bath room with the walker that should be sufficient to keep the leg straight with the ankle stiff. I think that some of the edema in the foot is due to the pressure from the tightness of the closures of the boot on my foot.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka Offline OP
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Advice please
Has anyone been told to wrap an ace bandage around their face to reduce swelling?
I asked about masssage to reduce it and the dr.recommended this. I can not figure out how to do it without choking myself. I took the bandage with me to the prothodontist this morning and he wasn't sure how to do it. I thought that perhaps I need to cut it on the length because at 3in. it is too wide for under my jaw but it may unravel. If I double it over there will be a problem with the velcro closing sticking to itself. The only other thing I can figure out is to loop it around and tie it on top of my head like a cartoon character with the mumps or a tooth ache.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Malka,

To help with my swelling I would use a one of those...Darn, I can't remember the name...they're like a hot water bottle but they are round with a screw cap on top...it's nice and soft and it would form to my face and neck areas. I would fill it up with ice and cold water then at bed time I used hot water in it. It worked great. I bought it at CVS.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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Malka Offline OP
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Thanks Ray. I will ask about heat/cold. I think the dr. wants pressure, not heat or cold.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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