| | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Rita,
Aren't you the tough one! Posting from your hospital bed. I'm in awe. Hope the recovery is quick and the margins clear.
Susan
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Way to go you are doing so well!!! I know it sounds like a repeat but I also am in awe and can only hope others have as good surgery results as you are having! Keep up the great work!!! The inspiration continues.....
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | I am home now. They discharged me yesterday. It feels good to be home but I am still trying to figure everything out.
My hardest issue is getting enough calories and fluids down. This is a real challenge. The temporary orbitor or whatever you call it did not have to be screwed in, which ia cool - but it covers entire palate, and thick enough that it creates a challenge to maneuver stuff around it. Add to that, I cannot use a straw because the orbitor leaks air somewhere, and if I try to take fludis straight from cup with this leak I get fluids out the nose (no thanks) .. so I am using a syringe to put the fluids in the right place to get them down - which is doable. don't get me wrong but it is slow and gets less down than I want. Hopefully the new one after this will work better for food and fluids.
Pain wise I am doin ok,, oxycodon 15-20 mg every 4 hrs keeps it regulated so that isn't too bad. My lower jaw gets real sore/tired feeling if I dont make sure I have my neck right but other than that I would say pain aint bad at all.
My throat gets very sore if I dont get pain meds right on the nose of time ... making swallowing almost impossible. this is easing some now but at hospital it got me ticked a couple times - they would wait to give me pain meds till i was really hurting, then tell me I had to take oral ones ... i finally told them look - on time orally - no problem. Late? then give them by injection because I am not going thru even more pain to reduce pain and then waiting another 20 minutes for relief. - they finally understood and put a stop to that vicious cycle.
HAVE A QUESTION:
I have never had diabetes but my sugar #s were quite high in the hospital and they were givin' me insulin for it - said it was common after surgery.... the day of discharge my numbers were still at `60 so they gave me a shot of insulin before going home..... should i still be checking this? they dont say anything in discharge papers about it ...
anyways - good to be home and i thank ya all for your ongoing prayers and support.
Last edited by azcallin; 08-13-2008 05:58 AM. Reason: misspells - oops!
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I have been diabetic for almost 15+ years and I am not sure what a reading of 60 is cause in canada we read differently. The only thing I have been told with diabetes is that when I got gestational diabetic they said to watch it later on if life and low and behold I had strokes and ended up on insulin. We look for blood suger between 5-7. This isn't much help I know but I think if they were concerned about it they should have let you know. Probably from what I know about blood sugars after surgery they can go up because of the liquid feeding has a lot of suger in it. You may not take that much in a normal day. I am not a doctor (2 weeks shy of graduating mind you lol) but this is just kinda what I think. There are definate signs to watch for concerning hi and low blood sugars. If you find yourself really lathargic or your body feels stiff and achy all over (means the blood is too thick to move) or if you are really thirsty and just can't quench it. Which is a lot like being dehydrated. Another symptom of high sugar is you have to pee a lot (that is your body trying to regulate and get rid of excess sugar)..Do drink lots of water it can help a bit. If you are really concerned you can get a meter and monitor it yourself. Like I said I don't know about the american readings but your pharmacist would.
You are doing great keep it up!!
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
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.
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | oops blood sugar was 160 at discharge, not 60 - my bad sorry
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Rita,
I'm so glad that you're home. Colleen has been doing a great job of keeping us posted on your progress.
FYI, the correct word for your prosthesis is, obturator.
You'll be feeling better every day. Please keep us posted.
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"
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Nurse called this morning.
She said path results show CLEAR but very CLOSE margins, and that the squamous cells invaded not only the jaw bone but lymphatic tissue in that area too (can anyone tell me exactly what this means?), so they are discussing whether I will do just radiation or if they will combine it with chemo too.
I am kinda down with this news today.
Was hoping for a better report.
I know many of you have been here before ...
Signed Rita, knowing she will beat it but wondering if she is up to the ride at this moment. (just being real)
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Rita-my husband also had invasion of the jawbone and lymph nodes. They combined chemo and radiation as the chemo he was on (Cisplatin) made the radiation more potent. You ARE up to the ride. You can't get off now-it's not over. Make sure you understand what the side effects will likely be so the surprises are minimal. Also, if you don't understand something, make the doctor explain it until you do. Don't be afraid to ask questions even if the answers are hard to swallow.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Today's treatments of concurrent chemo and radiation usually breaks the chemo infusions into weekly smaller doses as opposed to how they did it with me 2 years ago, which was one huge dose every 3 weeks, three doses in total. Most who get the smaller weekly doses handle it far better than those of us that got the bigger bags so it may not be as bad as you are thinking.
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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