Rita (azcallin on the forum) is having her surgery today....a partial maxillectomy for SCC. She is not certain of the extent of the surgery. That will be determined by a CT done immediately before the surgery.

Rita has great family support, with children ranging from their twenties to a 3-year-old, so she will be well taken care of.

I'll post if I hear from any of them, and I know that her new family here will hold her in their special thoughts today.

Marieka, thanks for reminding us of Rita's surgery. I didn't mean to hi-jack the thread, but it had gotten to 5 pages and seemed to need refreshing. I'm glad that YOU are doing well. We maxie girls have to stick together!

XOX

Rita's sister called me tonight to say that they would appreciate your prayers.....that Rita had not recovered after anaesthesia like they had expected, and that she was receiving blood. She is anemic, so maybe they are just trying to boost her rbc. I hope that's it. I hope that tomorrow is a better day. Her sister did not know much about what tissue they had removed. She will know more tomorrow.

XO

Rita,

You can do it, just like that Little Red Train going up that awful hill.

She will have my prayers and I hope I can give her some of my BS to help her along the recovery road.

Hoping and praying that Rita gets better. Please give an update when you can.

hi all and thank you for your prayers,
i am logged in at the hospital on the laptop,
i am doing ok had a scare this morning with a bad bleed but it eased up before they did another transfusion,
during surgery i lost too much blood so they did a transfusion then.
i cannot swallow yet ,,, trying but cant. will get there i am sure ... cannot talk very well yet cuz of the pain but using a pen and paper
have a splitting migraine so i want to get right off of here but wanted to give you an update, not sute what day they will let me go home - at first they said today now they said maybe tomorrow or monday ... so no idea

thanks all and take care. will send another update another time.

oh forgot!
they took everything behind the tooth next to (behind) canine
and did not have to screw in prosthetic as thought which i was happy about

Crossing fingers too for clear margins.
Great to get the update from the hospital.

thanks and amen
dr told us he will do radiation regardless because there are so many places for rogue cells to hide there in vessels and muscles etc ... but said hopefully bad effects will be minimal becaure it will be a pretty localized area...
but least we have 6 weeks tll then,

ok pain meds kickin in again so gonna try to go back to sleep

talk to you all later.

Rita

Rita:

Glad you posted an update, thank you. Its always good to hear from someone who has gone thru a medical procedure. Hope they got it all and the radiation will kill any chances of a return. Feel better soon.

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

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

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.

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

Congrats

oops blood sugar was 160 at discharge, not 60 - my bad sorry

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

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-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

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.

I was going to post that60 is low but I see you caught it. Mine was up when I had surgery and it's been down since. Above 120 is considered high.

Rita:

You can do this,dont give up. I know its diffiuclt, but it can be done. Hang in there.

thanks all. yes i can and will get thru this ... just hearing news i was not expecting hit me hard is all. i was kind of on auto pilot sailing thru all of this but that one jammed the auto pilot controls and made me rethink ...

they just called to set up consult. said i will see oncologist dr, dentist, and radiologist next monday at the UW... so we shall see what all they have to say when monday comes ... until then i am dismissing them from my mind as much as possible because i need to focus on eating or finding some way to get some calories ,.,. i am losing too much

i am down about 13 lbs and can't find anything to get in me to stop the losing ... i dont feel hungry once i start to eat but feel hungry before i take a bite ... and most things are too hard to eat ....

any suggestions on high calorie things to eat that are soft and easy to get down?

i really only eat a bit of pudding here and there ... and lots of water. jello seems worthless but i do eat it some... but i want something more substantial so i am not run down for treatments.

Carnation Instant Breakfast VHC.

Rita.....It sounds like you are going to have to do as David has said.....choose a high-calorie nutrition drink and make yourself get it down, like it or not. You obviously are not going to be able to take in enough calories right now to stay healthy.

I, myself, preferred the high-calorie Boost.....Later, I changed to the high-protein, after I had stopped losing weight.

You are right that you need to keep your strength up....so keep nibbling, but use the drinks to get your nutrition. Remember,,,,your building blocks need fuel to do their jobs, even if that fuel doesn't come from your favorite sources!

XO

Thanks! ok shall try those - my daughter went and bought a bunch of high protein calorie drinks today while she was out to do her errands .. (smile) so we will see how those are too. also got about 600 calories worth of cream of wheat down ... so we will get this going yet ... don't want or need to lose weight so time for those calories

VHC is sometimes hard to find, dunno why, but look in the diet section of supermarkets to find drinks like Boost and Ensure. Safeway carries a less expensive store brand (no name to it) that is actually made by Ensure. Wally carries a house brand also.

Point is that you can get down a LOT of calories without filling yourself up volume-wise.

I make milkshakes which I estimate to be about 1000 calories. Its pretty good and you can alter it to make it more nutritious.

3 to 4 cups chocolate ice cream
1 cup peanut butter (smooth)
1 to 1 1/2 cup milk
3 tablespoons sugar
1/4 cup chocolate syrup

Blend it up and enjoy. All the ingredients are approximate, add more milk to thin it down if you need to. Or you can add boost, ensure or one of those nutrition drinks to make it healthier.

I believe that DavidCPA had his pharmacist order the VHC as it is not normally carried on the shelves.

David should chime in here soon.

Deb

VHC is currently ONLY available thru the pharmacy sections of stores like Walgreen's, CVS, etc and ordering directly on line. One does not need a prescription to order it. I would call Walgreen's one day and they would have it delivered to the store usually the very next day. I paid $30 per case of 24 cans and it only comes in yummy Vanilla. During Tx and for weeks after I drank the can room temp and I tried downing 6 cans a day which gave me 3360 calories. After the throws of Tx were over and lasting over a year post Tx I mixed a chilled can with an equal amount of whole milk and drank a can with each meal just to make sure I was getting proper nutrition and added calories. Even with this I didn't start to add pounds until I was 16 months post TX.

I just looked up some calorie info. I am shocked at how many calories are in my super shake that I drink daily sometimes twice a day. One cup of peanut butter has 1520 calories and each cup of chocolate ice cream is 350. My guess of 1000 calories is way off. That shake is closer to 2700-3000 calories. Its amazing I havent gained my weight back drinking that every day, guess Im still healing.

Like I said I was 16 months post Tx before I started gaining back the weight I lost.

David, it's buried in another thread so you might not have seen it, but I asked my Option Care (owned now by Walgreens) dietitian to get VHC because I am currently only able to tolerate slow feeding so I wanted to get lots of calories in each can consumed -- She reported that since VHC couldn't be paid for in the plan, but substituted 'Nutren 2.0", also made by Nestle, which has 500 calories per 250ml can in yummy Vanilla. VHC is 2.25, BTW, with 560 cal/can.

http://www.activeforever.com/showpr...n-20-24-per-case&source=positiontech

I don't know why VHC isn't on their list, unless it is not classed for tube feeding; the Nutren is tube or drink.

Pete-

I was told by my dietician, when I was figuring out what formula to use, that the VHC couldn't be used through a feeding pump unless you added water to it because it was too thick and would end up getting clogged and stuff. Don't know if this is actually the case but I took her word for it and went with the 2Cal!

Pete, I use 2cal made by Ross also. Are you using a feeding pump? It takes a long time to do a feeding that way. But thats how I got thru treatment and recovery. You can start it slowly at 40ml per hr and go up from there. Also watering down your formula by about 1/2 can makes it easier to tolerate.

I just used the VHC through my PEG. Due to some sort of snafu, the re-order of Jevity I placed on Monday didn't go through (grrrr!!) so I'm going to run out soon, so I'm going to mix in the VHC. I added 8 ozs. of soy milk, which also adds 100 cals., and it went right in, no problem. I'm not on a pump, if it matters.

Free is always better and loosing 60 cals a can isn't a big deal.

My electric feeding pump (Kangaroo Control) can be set from 1 to 500 ml/hr; 500 would be two cans/hr @ 250 ml/can. Certainly, I can hand pump faster than that; even gravity flow faster, but I have to concentrate on what I am doing -- With the pump, I can read, watch TV or even sleep while the flow keeps happening -- Given my left wrist is a little torn up, the pump is right for me.

When I had a big diameter PEG with my radiation, I was able to gravity feed the can into the syringe and occasionally pump it by hand if I was in a hurry. With this smaller tube, gravity doesn't work except occasionally for plain water; pumping at the same rate as before, about four-five syringe-strokes to the can, perhaps a little slower because more effort, was not acceptable to my gut -- I would get incredible rumbling quickly followed by throne time.

I suspect Medicare won't pay for the VHC 2.25 cal/ml because it isn't pumpable (I'd bet it would have with my old "big pipe" PEG), so it looks like the 2.0 cl/ml stuf is a good compromise (tube or drink).

I tried tasting either the Novartis Fibersource HN 1.2 cal/ml or the Ross-Abbott Osmolite 1.2 cal/ml and it was definitely not intended for drinking. BTW, Ensure, Boost and the Safeway generic are all made by Abbott.

When I first tried the food pump, I set it on 300 ml/hr, which was slightly slower than syringe pumping, but had the same problems. The dietitian said to cut it back to 100 ml/hr, which was much slower than it had ever been, but the problems went away. I have now slowly moved up to 150 ml/hr and all is still well. Now I am using the Nestle Nutren 2.0 cal/ml to get more total calories per can.

David is giving financial advice from the heart when he says "Free is always better..." <grinz> He's still busy, however, looking for stray bank accounts and auto registrations!

I was surprised I could find no stores that carried the Carnation VHC... They all told me medical supply places ...

So I called there and they said they have it and that my medical insurance will pay for it if doc faxed in a script for it ... so I called my regular MD and she said no problem and faxed it in.

I think though I will check with like Rite Aid or Walgreens and see if they can special order it for me, because they charge $70 for 24 cans at medical supply and that seems unreal and is ripping off the insurance co, when at the company's own website (carnation) it is only $50 to order online and have delivered free....


I also noted AMAZON.com carries it so can have it shipped direct and it is $31 for 24 cans there.... plus shipping.


I got some soup down today HORRAY! I strained some cream of chicken and had no problem with it.. felt so nice getting something warm down.

Also fudgecicles and those freezie pops my daughter loves ... I am grabbing anything I think I can get down LOL ... but feel I have reached a turning point last couple days where I am able to get more down for some calories ...

I am hoping the prosthetic guy can get a better fit on Monday so I can try a bit more adventurous eating... Sucks feeling the hunger but not feeling the ability to do it. (I am sure you can relate). So far it just has not been a good fit for eating or drinking and within 2 days of having it adjusted it needs redone ... He says I am healing mega faster than he is used to... he cannot believe it. While this is good, it is a pain for making this thing work LOL.


I told my daughter that I will save the family a ton of money through this because I have always been one who loved to go out for dinner ... I love food ... well, now I can settle for a 100/$3.99 freezie pop and fix them their 4 meals/$15 dinner and everyone is happy LOL ...

Another good note: I have only had to take probably 3 pain pills all this past week, other than the one i take every night at bedtime to ensure good sleep ... trying not to take them unless very necessary.


OH QUESTION for you pros out there
I can tell my jaw is tightening up and not opening as far or as easy as prior. I am trying to carefully work it just by doing the open close motions and then putting fingers in between and trying to spread my fingers to increase gap .... Those who have had this happen what have you used to exercise it and keep it from losing motion and to regain the part that is lost? I am not sure if having TMJ and arthritis prior is making it worse or not but I know I don't want to lose any more movement in it because already the prosthetic is a bit hard to get thru the gap ... so I am determined to fix this.

Thanks all Have a wonderful day!

David posted in one of the threads that he has his local Walgreens order the VHC for him at about one-half the price you mentioned -- I don't know if they charge shipping when they do it that way -- That stuf is all *heavy*!!

Rita:

Keep working your jaw, its very important to avoid big problems. Ask your doc for tongue depressors and stack as many as possible in your mouth and hold that for 7 seconds 7 times per day. When you think you have a wide enough opening, slide in another one or two to stretch your jaw. Do this minimum 7 times per day. Its so important that you do this so you dont end up with trismus. I wish somebody had told me the importance of working my jaw. Here I am now only able to open my mouth 3 tongue depressors wide (about 1/2 a pinky finger). Ask your doc for a therabite, that will help you stretch your jaw, dont take no for an answer. Or in my case always being told to go ask a different doctor and not one would get a therabite for me even though I desperately needed it.


Pete:

Your flow rate is pretty high. I had started at 40 and moved up to 180 which was my max rate. Everytime I had problems with my feedings, I had to go back to 40 and start over trying to build up the rate. Which for me was many times that the feedings made me sick. It could have been the rate, the formula, or just basically having a weak stomach and sensitive digestive system. If you have alot of "throne time" try slowing the rate and watering down your formula.

Az,

This is a post I did in March of 2007. See if this helps.

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for over 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in.

You can also order it online but it usually costs more and takes much longer to get.

No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you.

As a matter of fact, David, I plan to get some VHC later on, so thanks for the ordering details -- I am a lazy fellow, and retirement has made that worse, so a can of nourishing food for breakfast is just the ticket, plus some coffee of course!

BTW, I went to my favorite bakery/cafe yesterday and had my first cup of coffee (cafe au lait in the big fat ceramic cup) since my surgery in late June -- It was great, but I'm going to have to use the cardboard cups for a while because my new tongue wasn't cooperating with the big fat cup and I was spilling a lot. Also, had to wait for it to cool down.

The barista and I were comparing scars; he had an elbow ligament replaced and they harvested it from another part of his arm -- But my shark-bite wrist trumped his little ligament scar, plus my slit throat and trach hole are pretty good stuf. I feel like a big kid!

Christine, I just tried jacking the flow up to 160, and I could feel that one building up, plus I get a sweating forehead as a warning, so I put it back down to 125 and that seems OK so far.

I wonder what has changed internally because post-radiation two and a half years ago, I would routinely gravity-feed two cans in fifteen minutes, which is a flow rate of 2,000 ml/hr!!

I do like using the pump, however, and it's not difficult to stop it and disconnect when I need to be un-tethered. I just wish the batteries worked so when I move it back and forth between bedroom and living room I wouldn't need to redo the settings (did I mention that I am lazy?) -- Sooner or later, I will be taking the little sucker apart to see if the batteries can be replaced without too much fuss.

They called today to let me know they will insert the PEG on the 10th of Sept. so I am glad it will be in place prior to radiation starting. They said they keep you overnight when they do it. I did not know that. Did they keep you all overnight?

I had to reschedule my radiation simulation... will do that next week instead. Got the stint made so that part is done.

One step at a time ...

Hope you have a good day.

Alot of people are sent home later in the day after their PEG is installed. I also had my port done at the same time. I was kept overnight because I was pretty sore. One advantage to staying overnight is the next morning I had my radiation mask made while still a little groggy from the pain meds.

Pete: Glad you were able to adjust your feeds so it works better for you. The 2 cans using the flow rate is amazing. I had trouble from day one with that method and also couldnt just push a can in slowly either. Both ways made me puke it all back up and that stuff sure tastes bad. I ended up losing a ton of weight and got dehydrated which landed me twice in the hospital. The pump and my nutritionist saved me by introducing overnight slow feedings.

Give the overnight way a try. Put 4 cans and a little water in a bag and set it for whatever you can tolerate (125 is pretty good). Gotta get to bed kinda early like 8 or 9 and let the pump run. Make sure you use a couple pillows so you are sleeping inclined. Thats the really easy way. It also takes the load off doing it so much daytime.

My first PEG was done in outpatient surgery in 2005 -- Wheeled me in, knocked me out and put it in with an endoscope.

For the second one this year, I was already in hospital, so an aide and I walked down to radiation (first PEG was done by Gastro Doc), they gave me a local, and the Doc put it in using X-Ray (or Fluoroscope, not sure which -- If he had turned the screen a little, I could have watched it) and then they gurneyed me back to my room.

I found both of them to be a piece of cake, esp compared to the rest of the hacking and slashing and microwaving that I was enduring <grinz>, with the second one being easier.

Christine, I am back to 100 -- I took a can to bed the other night and when the 'food's all gone alarm woke me up, the bed and I were drenched in sweat!! I dunno what that was all about -- I think I'll try two cans tonight and see how that goes -- I normally read for a few hours in bed anyway.

Pete:

Try setting it back even lower like to 80 with 2 cans in and one can full of water and let it run overnight. Thats a trick to get extra hydration by adding water. For me, I had to add the water cuz my stomach couldnt tolerate straight formula.

You made me smile when you said you woke up full of sweat, sorry. One night my alarm went off and I found that I was drenched in formula....YUCK!!!! I would have preferred the sweat Another time I must have been having some weird dreams cuz I had the tubes all wrapped around me like spagetti on a fork. Sometimes I would start to run to the bathroom still connected to the pump. It took me almost a year to be able to look back and laugh at those situations and see how far Ive come.

Its all trial and error with the pump feedings. Hopefully by the time you get it perfected, you wont need it anymore.

Just to correlate(sp?)....Bill would break out into a sweat, usually after the first manually (gravity) poured can of the day. He would need several minutes to sit/lie still after his feeding to feel better. We were always trying to time his feedings around the two a day radiation treatments and the sweaty, queasy thing was a pain. Mostly happened in the mornings though...the rest went OK.

Deb