Important! Please help Connie start eating?

connieprice1
connieprice1 Member Posts: 300 Member
Hello again, I have another question for the experts. Although Connie is attempting to eat, she is having a hard time with it. She is 5 months on the peg tube and has not regained any lost weight. In fact, she weighed herself the other day and had lost another 3 lbs. She started treatment at 134 lbs and is now down to 107 lbs. My question is: Will the process take care of itself or should she be trying harder to force herself to eat. She says food is tasting good again but her saliva glands are not yet working and food is too dry to swallow. She will take one bite and stop immediately if it is too dry. I tell her to take a sip of water before and after every bite to try and wash it down. I have never had cancer and it is hard for me to offer too much advice on this subject. She does eat some soup and can eat ice cream, peaches, pears but nothing solid. She does not eat much quantity when she eats. She is a lot more active and although I am glad to see this she burns more calories through activity. Also it has been a really hot summer and this causes her to sweat more also. I need to know whether I should push and persuade more or see if when her saliva glands start working better she will be able to swallow easier with time. To make things worse, the bottom denture she wears easily but the top ones hurt her jaw because she has to hold her mouth more open for them and she says her top dentures are uncomfortable. She does not see the doctors as often now so your advice on this issue is so important to us. She is skin and bone right now. Thanks, Homer
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Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    gaining weight
    Homer, the first thing I would do is to request of one of her doctors a referral to a nutritionist. It sounds like, first of all, she is not getting enough intake through her tube. You do not mention what is going into that tube, but I was on a tube for more than four years and we had to make some tweaks from time to time. One time, it was going from 1200 calories per can (Jevity) to 2000 (HiCal); another it was, at the nutritionist's insistence, to go from the HiCal back to Jevity, but at a higher calorie level (1600 cals, if I remember correctly).

    I was also advised to do two cans per feeding and to increase my feedings to six times daily. I gained weight.

    While the tube was in, I DID insist on eating orally as well, as it seems your wife is. Good for her!

    If you've been reading back through posts, you must be aware that some of the best ways to gain nutrition orally while fighting things like dry mouth and esophogeal stricture and so forth are ice cream (as you mention), smoothies (you can buy them or make them at home in the blender), yogurt, pudding, maybe jello, milk shakes, and, oddly enough, things that you can nibble on like stick pretzels (I know that sounds weird....it's the nibbling), crackers, and the like.

    I would suggest that you look at sweetblood's collection of links for head/neck cancer-related questions and answers where there is a collection of ideas regarding how to make nutritionally sound smoothies, among other things, offering the kind of diversity that your wife truly needs to maintain a healthy diet (mine were basically dairy products and fruits, but her links include some tasty looking ideas for veggie smoothies). Oh, that reminds me: if she can handle it, sour and acid wise, suggest that wife drink lots of fruit juices and, my favorite, V8.

    My advice to you directly is to get used to the notion that your wife will sometimes be able to eat something and then will not be able to eat it. Get used to the notion that your wife will plead for some sort of food and when it is prepared (or bought) and presented, simply toss it after a bite or two. Get used to the idea that your wife may NEVER regain her salivary gland action (again, I am not aware of her specific ailment, but some of us lose our saliva glands following radiation therapy).

    I would say that if she is eating pears and peaches naturally, she is well on her way to eating basically a normal diet, however. I STILL have issues with those babies :).

    Best wishes to your wife and her loved ones. Hang in there, both of you!

    Take care,

    Joe
  • DrMary
    DrMary Member Posts: 529 Member
    Don't sweat the solids
    You can gain weight on liquids and soft solids (Doug did). Consider looking into some of the products manufactured to help with weight gain - Nestle makes a Boost pudding that is not awful (butterscotch seems to be everyone's favorite) and something called BeneCalorie -it's "healthy" fats that are combined with some protein and designed to be stirred into things like pudding or even mixed with juice (mixed with OJ, it is a bit like orange sherbet). Homemade stuff is better, of course, but those can be used to get over a hump.

    I know I've suggested maltodextrin powder a lot - I really do think it helped Doug with his weight gain and was a way to get carbohydrates in him when all he could swallow were thin milkshakes. It goes well in smoothies, also. I consulted with some body-building types and they swear by it for building mass.

    Two main things to consider, beyond what's been said:

    1. Your metabolism, coming back from severe weight loss, is different. I was warned about this, and still surprised. We got up to the calorie level recommended by the nutritionist and then well above that level and it still took weeks for weight gain to happen (if I recall, we were up to 3000 cal/day - almost 1000 cal over what was maintenance). You might try keeping track of calorie intake - very enlightening. It helped for us to set goals - an additional 100 calories a day, for example.

    I think her level of activity is a good thing (Doug was playing hockey) - it gives the body clues that it needs to build muscle and store energy.

    2. Our doctors convinced me to let go of "healthy eating" rules for a while (difficult for the Fiber Queen to do). "Cream and butter and cheese in everything" was one recommendation. Since nothing else was working, I went for it - cream of this soup, scrambled eggs made with cream and velveeta, whipped mashed potatoes made with, yup, cream and butter and cheese. Once the weight gain started, I cut back a bit (and he could also eat more). His cholesterol and triglycerides levels stayed fine, and I really saw a difference in energy level. Given my "high-fiber, low fat, nutrition-dense" rules for our family diet, I couldn't believe I was making this stuff - I can only say it worked for us.

    Your concern about heat and sweat is valid - it takes a lot of water to build muscle and store fat. How much ever water she is taking in, she might need more.

    Best to you both and happy eating.
  • Skiffin16
    Skiffin16 Member Posts: 8,304 Member
    DelMonte Peaches...In the jar...
    Homer, I didn't have the PEG, but I would eat a few of the sliced peaches mentioned above. I could taste them and they did provide some calories. I mainly ate them just to keep the swallowing muscles working and in order.

    I know you mentioned pears which is probably equally in value, maybe a bit morre grainy in texture.

    I think Connie is probably on track considering...she might increase her calorie supplement with a can of Ensure Plus, Boost or similar just to add a few hundred more calories if she is losing weight.

    Main thing is to keep the throat muscles working, try to eat when you can, and supplement the majority with the PEG for now.

    Best,
    John
  • Greend
    Greend Member Posts: 678
    Weight
    I had my peg inserted in Jan as a safety measure. I had lost so much weight they were afraid I would not be able to have a PEG inserted if I continued the loss. This is 13 years after rads. I was trying to eat however I was aspirating my food resulting in pneumonia. My GP doctor finally told me to go 100% tube. I was at 147 lbs and started taking in between 2100 and 3000 cals per day with the generic brands of Ensure. I am now at 164lbs. I would not stop trying to eat but use the tube to "fatten up" some.

    Good luck and you can do it for sure.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Can't really add much to
    Can't really add much to what Joe, and Mary said. Great advice.

    I went from about 130 lbs to 87 lbs. It took me a long time to be able to gain that weight back. I was taking in 2400 calories a day, and I still wasn't able to gain for quite some time. The first year out, I went from about 87-99 lbs. Then the second year, 99 to I'm about 112 now. That is about 12 lbs a year gain.

    One thing I did was I never drank or ate anything without calories. I kept water in my purse to sip on, and by my bed side to wet my mouth, but with meals, I always drink smoothies, almond milk, milk, or tea brewed from entirely milk. She may have to change her way of thinking about 'eating'. It won't be like she used to eat, at least for a while, for me, it's probably permanent. About 50% of my calories and nutrition is by drinking it. Also, I am able to consume bigger portions than I was last year, for sure. I also realize that it's going to take me longer to eat, well over an hour for all meals, sometimes pushing two hours for a challenge like meat. I also had to get used to eating food that wasn't piping hot. Cold food was unappetizing to me. I had to learn to eat it and keep pushing through, even tho I found it icky. Now I'm just used to it.

    Last night, a FB friend posted to a picture of a crab omelet I posted almost a year ago. My post said that I almost ate the whole thing, or I ate 3/4 of it, something like that. Last night, I ate two crêpes, about the size of that tiny omelet that I couldn't finish last year. It takes time, and perseverance, and a shift in the way you think about eating, since a lot of the old ways and things aren't going to work for a while.

    The more she gets nutrition wise, and calorie wise, and starts getting her appetite and weight back, the more she will transition to solid food on her own. Right now, I would concentrate on getting in enough calories and protein so that she can gain or at least stop losing. I wrote everything done and kept track of every calorie. I would try and get as much nutrition as I could drinking whole fruit and veg smoothies, and taking in all the soft foods I could. She will work her way into solids a little at a time.

    I wish I could describe how awful it is trying to eat solid food with no saliva. It's like trying to eat ground up sawdust, and buckshot, and glue. If you have ever had a wicked cold, and have had to breathe through your mouth the whole night and you wake up and your mouth is so dry, it's like that, but worse. Now when you wake up all dry, don't take a drink or anything, just try to eat some dry, plain saltine crackers. No water. It's gagging and not exactly appetizing. :(

    Also, not sure if she is using the l-glutamine powder, not only is it good for mouth sores, but it's good in helping with muscle gain.
    Here is a good all around smoothie meal.  I did the nutritional analysis for you.  The first number is the amount in the smoothie, the second is what you would need for a 1600 calories per day.  

    1 medium apple
    1 medium carrot 
    1 banana
    3 leaves of romaine 
    1 tbs almond butter
    1 cup milk
    1 tbs flax seed oil
    1 tbs protein powder

    Total Calories (kcals) 597 -  1658
    Protein (gm) 17 -  46
    Carbohydrate (gm) 76 - 130
    Total Fiber (gm) 10 - 25
    Total Fat (gm) 29 -  13.3 - 23.2
    Saturated Fat (gm) 5.4 < 6.6
    Monounsaturated Fat (gm) 10 **
    Polyunsaturated Fat (gm) 12 **
    Linoleic (omega 6) (gm) 4.1 12
    Alpha Linolenic (omega 3) (gm) 7.5 1.1
    Cholesterol (mg) 19 < 300
    Vitamin A (mcg RAE) 735 - 700
    Vitamin C (mg) 32.7 -  75
    Vitamin E (mg a-TE) 9.5 - 15
    Thiamin (mg) 0.4 - 1.1
    Riboflavin (mg) 0.8 - 1.1
    Niacin (mg)  4.1 - 14
    Folate (mcg, DFE)  148.4 - 400
    Vitamin B6 (mg) 0.9 - 1.3
    Vitamin B12 (mcg) 1.3 - 2.4
    Calcium (mg) 486.2 - 1000
    Phosphorus (mg) 485 - 700
    Magnesium (mg) 152 - 320
    Iron (mg) 3.2 - 18
    Zinc (mg) 3.1 -  8
    Selenium (mcg) 11.7 - 55
    Potassium (mg) 1540 - 4700
    Sodium (mg) 288   -  1500 - 2300
    ** Nutrient has no established recommendation.

    Avocados are a great food.  Good fats and good for you:



    AVOCADO BANANA BERRY SMOOTHIE

    Half a ripe avocado
    1 to 1 1/2 frozen bananas
    4 to 5 frozen or fresh strawberries
    Splash of nut milk
    Pinch cardamom
    Pinch allspice

    PEAR AVOCADO SMOOTHIE

    1 large pear, chopped
    1/2 cups green grapes
    1/4 avocado
    2 teaspoons honey
    1 teaspoon lemon juice
    Blend and top with chopped pecans.


    GREEN ENVY AVOCADO SMOOTHIE

    1 avocado
    2 bananas
    2 cups orange juice
    1 cup of strawberries (preferably fresh, but frozen will do)
    1 cup of orange or strawberry sherbet
    1 cup ice

    GREEN GOBLIN’S POTION

    1 medium or large ripe avocado
    1 1/2 cup fresh pineapple
    1 Tbs honey
    1 1/2 cup orange juice
    2 tsp lime juice (optional)
    1/4 tsp coconut meat (don't use if you have trouble swallowing) use some coconut milk instead
    2 ice cubes

    APPLE AND AVOCADO SMOOTHIE

    1 Granny Smith apple, cored, skin on
    1/2 ripe Hass avocado 
    1/2 apple juice 
    1/2 cup ice 
    3 sprigs mint leaves
    1 teaspoon freshly squeezed lime juice

    Combine all ingredients together in a blender like Vitamix or HealthMaster. 

    AVOCADO BERRY SMOOTHIE

    1 medium avocado, peeled and pitted
    1 tablespoon cashews, raw 
     1 tablespoon honey
    1 cup water 
    1/2 cup blueberries, frozen 
    6 ice cubes

    Blend the avocado, cashews, honey, water, blueberries, and ice together until smooth. Serves 1-2


    GREAT SMOOTHIE RECIPES

    All of the following smoothies were processed in an emulsifier.   (like a Vitamix or HealthMaster)

    1 orange, peeled
    1/4  of a cantaloup
    8 oz of Silk coconut milk


    1/4 cantaloup
    1 banana 
    1 8oz container of Greek Yogurt
    1 tbs of Honey


    1 ripe pear
    1 banana
    4 oz Silk Almond Milk

    if you look through the nutrition part of the superthread, there are tons of links for easy to swallow food ideas and recipes.
  • nwasen
    nwasen Member Posts: 235
    eating
    Lot of good advice on here for Connie and I do have something to add. I would contact your local rehab and see about speech therapy. I thought it was only to help with talking but it encompasses so much more.
    I went and the woman who worked with me helped me to get thru the tough times eating. I had a swallow test to determine what I had problems with and what I didn't (in the beginning anything other than pure liquid was an issue for me). I had electrodes attached to my neck and while the electric was pulsing I would eat certain foods. It helped to rid my throat of some of the scar tissue from the radiation. I also had two stretches which allowed me to get bigger foods down my throat.
    I went back after the first month for another swallow test and had one more month of therapy. I loved my Susie, who was like a cheerleader. Insurance paid almost all of my treatments and it allowed me to have my feeding tube removed after 8 months. I am still ultra skinny; 134 to 98 (my high school weight) and I still use 3 cans of Carnation drink a day to supplement but I am getting better every day.
    There is help out there; just be sure and ask for it.
    We all wish Connie well; it is a long hard road for some and easier for others.
    Peace,
    Nancy aka toughcookie
  • connieprice1
    connieprice1 Member Posts: 300 Member

    gaining weight
    Homer, the first thing I would do is to request of one of her doctors a referral to a nutritionist. It sounds like, first of all, she is not getting enough intake through her tube. You do not mention what is going into that tube, but I was on a tube for more than four years and we had to make some tweaks from time to time. One time, it was going from 1200 calories per can (Jevity) to 2000 (HiCal); another it was, at the nutritionist's insistence, to go from the HiCal back to Jevity, but at a higher calorie level (1600 cals, if I remember correctly).

    I was also advised to do two cans per feeding and to increase my feedings to six times daily. I gained weight.

    While the tube was in, I DID insist on eating orally as well, as it seems your wife is. Good for her!

    If you've been reading back through posts, you must be aware that some of the best ways to gain nutrition orally while fighting things like dry mouth and esophogeal stricture and so forth are ice cream (as you mention), smoothies (you can buy them or make them at home in the blender), yogurt, pudding, maybe jello, milk shakes, and, oddly enough, things that you can nibble on like stick pretzels (I know that sounds weird....it's the nibbling), crackers, and the like.

    I would suggest that you look at sweetblood's collection of links for head/neck cancer-related questions and answers where there is a collection of ideas regarding how to make nutritionally sound smoothies, among other things, offering the kind of diversity that your wife truly needs to maintain a healthy diet (mine were basically dairy products and fruits, but her links include some tasty looking ideas for veggie smoothies). Oh, that reminds me: if she can handle it, sour and acid wise, suggest that wife drink lots of fruit juices and, my favorite, V8.

    My advice to you directly is to get used to the notion that your wife will sometimes be able to eat something and then will not be able to eat it. Get used to the notion that your wife will plead for some sort of food and when it is prepared (or bought) and presented, simply toss it after a bite or two. Get used to the idea that your wife may NEVER regain her salivary gland action (again, I am not aware of her specific ailment, but some of us lose our saliva glands following radiation therapy).

    I would say that if she is eating pears and peaches naturally, she is well on her way to eating basically a normal diet, however. I STILL have issues with those babies :).

    Best wishes to your wife and her loved ones. Hang in there, both of you!

    Take care,

    Joe

    Joe, Thank you for your
    Joe, Thank you for your reply. Connie has had 2 clean CT scans and most recently a clean PET scan on 6/17/11. We are working on the road right now and she has not been to MD Anderson since her PET scan. She has only been prescribed 4 and 1/2 cans of Osmolite per day. Really she has only done 4 per day, when she was sick from radiation that was OK but we are now going to start giving her 6 cans per day (355 calories per can). She can tolerate the tube feeding much better now and we want to start adding Ensure, Boost and Nestle's instant breakfast. We also want to try more smoothies packed with fresh fresh fruits and vegetables. This is all a learning experience, at 1st we were hoping she could return to normal eating asap but now I realize we need to work harder to get her more nutrition through the peg and when she eats orally that will just add to her intake. I should have paid more attention when I was in school to calories, carbohydrates, proteins and fats, as I am not very knowledgable on all of this. I made her a lot of milkshakes when she was doing radiation which at the time she could not handle them but it is time to break out the blender and we need to buy a food processer and go to work. We appreciate your taking the time to send us the info and hope you are doing well also. Your friends, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member
    DrMary said:

    Don't sweat the solids
    You can gain weight on liquids and soft solids (Doug did). Consider looking into some of the products manufactured to help with weight gain - Nestle makes a Boost pudding that is not awful (butterscotch seems to be everyone's favorite) and something called BeneCalorie -it's "healthy" fats that are combined with some protein and designed to be stirred into things like pudding or even mixed with juice (mixed with OJ, it is a bit like orange sherbet). Homemade stuff is better, of course, but those can be used to get over a hump.

    I know I've suggested maltodextrin powder a lot - I really do think it helped Doug with his weight gain and was a way to get carbohydrates in him when all he could swallow were thin milkshakes. It goes well in smoothies, also. I consulted with some body-building types and they swear by it for building mass.

    Two main things to consider, beyond what's been said:

    1. Your metabolism, coming back from severe weight loss, is different. I was warned about this, and still surprised. We got up to the calorie level recommended by the nutritionist and then well above that level and it still took weeks for weight gain to happen (if I recall, we were up to 3000 cal/day - almost 1000 cal over what was maintenance). You might try keeping track of calorie intake - very enlightening. It helped for us to set goals - an additional 100 calories a day, for example.

    I think her level of activity is a good thing (Doug was playing hockey) - it gives the body clues that it needs to build muscle and store energy.

    2. Our doctors convinced me to let go of "healthy eating" rules for a while (difficult for the Fiber Queen to do). "Cream and butter and cheese in everything" was one recommendation. Since nothing else was working, I went for it - cream of this soup, scrambled eggs made with cream and velveeta, whipped mashed potatoes made with, yup, cream and butter and cheese. Once the weight gain started, I cut back a bit (and he could also eat more). His cholesterol and triglycerides levels stayed fine, and I really saw a difference in energy level. Given my "high-fiber, low fat, nutrition-dense" rules for our family diet, I couldn't believe I was making this stuff - I can only say it worked for us.

    Your concern about heat and sweat is valid - it takes a lot of water to build muscle and store fat. How much ever water she is taking in, she might need more.

    Best to you both and happy eating.

    Thanks Dr. Mary
    Dear Doug & Dr. Mary, I first would like to thank you for always being there for Connie and I with your many replys to my posts. Dr. Mary you are an angel and we listen every time you have recommended something to us. As I mentioned to Joe, since Connie can tolerate more through her tube it is better we up her intake in this direction rather than just wait for her to get better at eating orally. Connie can help me more now with preparing food like scrambled eggs and mashed potatoes and stuff like that because I lack cooking skills. Mashed Potatoes are too dry for her right now but maybe they would go down easier with cream of soups and velveeta cheese. I will encourage her to thin it down a little more and throw in the butter & cheese to give it more fat content. We will need to go to a health food store for the maltodextrin powder as she needs muscle mass. Connie has drank water throughout her treatment but as we discussed tonight she may need to drink even more as she becomes more active. Actually if she can gain weight and stay active this is definitely the best medicine for her right now. Well, I'm sure I will continue to have more questions for everyone in the future as we walk down the path of recovery. Your friends, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member
    Skiffin16 said:

    DelMonte Peaches...In the jar...
    Homer, I didn't have the PEG, but I would eat a few of the sliced peaches mentioned above. I could taste them and they did provide some calories. I mainly ate them just to keep the swallowing muscles working and in order.

    I know you mentioned pears which is probably equally in value, maybe a bit morre grainy in texture.

    I think Connie is probably on track considering...she might increase her calorie supplement with a can of Ensure Plus, Boost or similar just to add a few hundred more calories if she is losing weight.

    Main thing is to keep the throat muscles working, try to eat when you can, and supplement the majority with the PEG for now.

    Best,
    John

    John, Thanks for the reply.
    John, Thanks for the reply. We are definitely going to be doing a lot more calories through the tube and I agree and Connie's speech therapists has told her that her swallow is fine (barrium swallow test confirmed this) I think we were pushing too hard for normal eating and trying to get rid of the peg tube that we were not making sure she was getting enough calories through the peg. As you know recovery is a slow process and everyone is DIFFERENT so we will let her eat what she can orally but get more in the peg. You are a character John and it is refreshing to have your sense of humor on this site. By the way, Did you eat those big fish in the picture? I sell tents and we have a trade show I attend every year in Feburary in Gibtown, Fla. it is very close to Tampa. I work most the time when I am there but I might just look you up some time. Keep up yhe clean scans, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member
    Greend said:

    Weight
    I had my peg inserted in Jan as a safety measure. I had lost so much weight they were afraid I would not be able to have a PEG inserted if I continued the loss. This is 13 years after rads. I was trying to eat however I was aspirating my food resulting in pneumonia. My GP doctor finally told me to go 100% tube. I was at 147 lbs and started taking in between 2100 and 3000 cals per day with the generic brands of Ensure. I am now at 164lbs. I would not stop trying to eat but use the tube to "fatten up" some.

    Good luck and you can do it for sure.

    Greend, I think we had the
    Greend, I think we had the wrong idea that for Connie to gain weight we needed to work hard at getting her off the peg but now that we know that isn't true we will be trying to get her as many calories as possible both ways. I have read many of your posts on the site and some are quite humorous I might add. Greend, "you seem to be able to take everthing with a grain of salt" as my mother used to say. We wish you the Best, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member

    Can't really add much to
    Can't really add much to what Joe, and Mary said. Great advice.

    I went from about 130 lbs to 87 lbs. It took me a long time to be able to gain that weight back. I was taking in 2400 calories a day, and I still wasn't able to gain for quite some time. The first year out, I went from about 87-99 lbs. Then the second year, 99 to I'm about 112 now. That is about 12 lbs a year gain.

    One thing I did was I never drank or ate anything without calories. I kept water in my purse to sip on, and by my bed side to wet my mouth, but with meals, I always drink smoothies, almond milk, milk, or tea brewed from entirely milk. She may have to change her way of thinking about 'eating'. It won't be like she used to eat, at least for a while, for me, it's probably permanent. About 50% of my calories and nutrition is by drinking it. Also, I am able to consume bigger portions than I was last year, for sure. I also realize that it's going to take me longer to eat, well over an hour for all meals, sometimes pushing two hours for a challenge like meat. I also had to get used to eating food that wasn't piping hot. Cold food was unappetizing to me. I had to learn to eat it and keep pushing through, even tho I found it icky. Now I'm just used to it.

    Last night, a FB friend posted to a picture of a crab omelet I posted almost a year ago. My post said that I almost ate the whole thing, or I ate 3/4 of it, something like that. Last night, I ate two crêpes, about the size of that tiny omelet that I couldn't finish last year. It takes time, and perseverance, and a shift in the way you think about eating, since a lot of the old ways and things aren't going to work for a while.

    The more she gets nutrition wise, and calorie wise, and starts getting her appetite and weight back, the more she will transition to solid food on her own. Right now, I would concentrate on getting in enough calories and protein so that she can gain or at least stop losing. I wrote everything done and kept track of every calorie. I would try and get as much nutrition as I could drinking whole fruit and veg smoothies, and taking in all the soft foods I could. She will work her way into solids a little at a time.

    I wish I could describe how awful it is trying to eat solid food with no saliva. It's like trying to eat ground up sawdust, and buckshot, and glue. If you have ever had a wicked cold, and have had to breathe through your mouth the whole night and you wake up and your mouth is so dry, it's like that, but worse. Now when you wake up all dry, don't take a drink or anything, just try to eat some dry, plain saltine crackers. No water. It's gagging and not exactly appetizing. :(

    Also, not sure if she is using the l-glutamine powder, not only is it good for mouth sores, but it's good in helping with muscle gain.
    Here is a good all around smoothie meal.  I did the nutritional analysis for you.  The first number is the amount in the smoothie, the second is what you would need for a 1600 calories per day.  

    1 medium apple
    1 medium carrot 
    1 banana
    3 leaves of romaine 
    1 tbs almond butter
    1 cup milk
    1 tbs flax seed oil
    1 tbs protein powder

    Total Calories (kcals) 597 -  1658
    Protein (gm) 17 -  46
    Carbohydrate (gm) 76 - 130
    Total Fiber (gm) 10 - 25
    Total Fat (gm) 29 -  13.3 - 23.2
    Saturated Fat (gm) 5.4 < 6.6
    Monounsaturated Fat (gm) 10 **
    Polyunsaturated Fat (gm) 12 **
    Linoleic (omega 6) (gm) 4.1 12
    Alpha Linolenic (omega 3) (gm) 7.5 1.1
    Cholesterol (mg) 19 < 300
    Vitamin A (mcg RAE) 735 - 700
    Vitamin C (mg) 32.7 -  75
    Vitamin E (mg a-TE) 9.5 - 15
    Thiamin (mg) 0.4 - 1.1
    Riboflavin (mg) 0.8 - 1.1
    Niacin (mg)  4.1 - 14
    Folate (mcg, DFE)  148.4 - 400
    Vitamin B6 (mg) 0.9 - 1.3
    Vitamin B12 (mcg) 1.3 - 2.4
    Calcium (mg) 486.2 - 1000
    Phosphorus (mg) 485 - 700
    Magnesium (mg) 152 - 320
    Iron (mg) 3.2 - 18
    Zinc (mg) 3.1 -  8
    Selenium (mcg) 11.7 - 55
    Potassium (mg) 1540 - 4700
    Sodium (mg) 288   -  1500 - 2300
    ** Nutrient has no established recommendation.

    Avocados are a great food.  Good fats and good for you:



    AVOCADO BANANA BERRY SMOOTHIE

    Half a ripe avocado
    1 to 1 1/2 frozen bananas
    4 to 5 frozen or fresh strawberries
    Splash of nut milk
    Pinch cardamom
    Pinch allspice

    PEAR AVOCADO SMOOTHIE

    1 large pear, chopped
    1/2 cups green grapes
    1/4 avocado
    2 teaspoons honey
    1 teaspoon lemon juice
    Blend and top with chopped pecans.


    GREEN ENVY AVOCADO SMOOTHIE

    1 avocado
    2 bananas
    2 cups orange juice
    1 cup of strawberries (preferably fresh, but frozen will do)
    1 cup of orange or strawberry sherbet
    1 cup ice

    GREEN GOBLIN’S POTION

    1 medium or large ripe avocado
    1 1/2 cup fresh pineapple
    1 Tbs honey
    1 1/2 cup orange juice
    2 tsp lime juice (optional)
    1/4 tsp coconut meat (don't use if you have trouble swallowing) use some coconut milk instead
    2 ice cubes

    APPLE AND AVOCADO SMOOTHIE

    1 Granny Smith apple, cored, skin on
    1/2 ripe Hass avocado 
    1/2 apple juice 
    1/2 cup ice 
    3 sprigs mint leaves
    1 teaspoon freshly squeezed lime juice

    Combine all ingredients together in a blender like Vitamix or HealthMaster. 

    AVOCADO BERRY SMOOTHIE

    1 medium avocado, peeled and pitted
    1 tablespoon cashews, raw 
     1 tablespoon honey
    1 cup water 
    1/2 cup blueberries, frozen 
    6 ice cubes

    Blend the avocado, cashews, honey, water, blueberries, and ice together until smooth. Serves 1-2


    GREAT SMOOTHIE RECIPES

    All of the following smoothies were processed in an emulsifier.   (like a Vitamix or HealthMaster)

    1 orange, peeled
    1/4  of a cantaloup
    8 oz of Silk coconut milk


    1/4 cantaloup
    1 banana 
    1 8oz container of Greek Yogurt
    1 tbs of Honey


    1 ripe pear
    1 banana
    4 oz Silk Almond Milk

    if you look through the nutrition part of the superthread, there are tons of links for easy to swallow food ideas and recipes.

    Sweet, I knew as I started
    Sweet, I knew as I started reading your reply who it was from before I seen your picture. I guess I know you pretty well having you help us so much and by the way I could never repay you for all the help you have given us. Thanks for the recipes, we will get started on these asap. I have a blender but I think we need to buy a food processor also to mix these properly. I guess a blender is OK if Connie drinks them, I hope they taste good because she will really like them if they do. Thank you so much Dawn for helping me so much with Connie, I guess you can sense that I need all the help I can get. You are one of the nicest people I have ever known and I will continue to pray that your hearing gets better. As you probably already know I will continue to post when I have questions for the experts. Doctors are great but they have never had cancer or treatments so this is such a great website because everyone here has first hand knowledge. I always try to watch what I say because I realize I have not had cancer and I only answer questions when I know what Connie treatments consisted of. Thanks for everything and keep us posted as soon as you find out the cause of the ear problem. Love ya, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member
    nwasen said:

    eating
    Lot of good advice on here for Connie and I do have something to add. I would contact your local rehab and see about speech therapy. I thought it was only to help with talking but it encompasses so much more.
    I went and the woman who worked with me helped me to get thru the tough times eating. I had a swallow test to determine what I had problems with and what I didn't (in the beginning anything other than pure liquid was an issue for me). I had electrodes attached to my neck and while the electric was pulsing I would eat certain foods. It helped to rid my throat of some of the scar tissue from the radiation. I also had two stretches which allowed me to get bigger foods down my throat.
    I went back after the first month for another swallow test and had one more month of therapy. I loved my Susie, who was like a cheerleader. Insurance paid almost all of my treatments and it allowed me to have my feeding tube removed after 8 months. I am still ultra skinny; 134 to 98 (my high school weight) and I still use 3 cans of Carnation drink a day to supplement but I am getting better every day.
    There is help out there; just be sure and ask for it.
    We all wish Connie well; it is a long hard road for some and easier for others.
    Peace,
    Nancy aka toughcookie

    Nancy, I and Connie
    Nancy, I and Connie appreciate your responses to our many questions. Connie has a speech therapists and a nutritionist but I work on the road all summer so she hasn't been able to see them until we get back home. We have a Pizza Concession and a Grill Concession and we book fairs and festivals throughout the summer. I also sell tents of all kinds and being on the road I visit amusement parks, carnivals, home associations as we sell shade structures for swimming pools etc. Connie did a barrium swallow tests before we left home and her speech therapists told her that her swallow was fine and that she could start eating orally but she has no saliva yet and it is easier said than done. She is trying hard because we don't want her to lose her swallowing muscles. We will continue nutrition through her tube and also she will continue to try and eat more foods orally. As you know Nancy cancer is a **** and when we have questions we just have to rely on our friends on this network. Which now we have a new friend named Nancy and I really appreciate your help. Your friends, Homer & Connie
  • Skiffin16
    Skiffin16 Member Posts: 8,304 Member

    John, Thanks for the reply.
    John, Thanks for the reply. We are definitely going to be doing a lot more calories through the tube and I agree and Connie's speech therapists has told her that her swallow is fine (barrium swallow test confirmed this) I think we were pushing too hard for normal eating and trying to get rid of the peg tube that we were not making sure she was getting enough calories through the peg. As you know recovery is a slow process and everyone is DIFFERENT so we will let her eat what she can orally but get more in the peg. You are a character John and it is refreshing to have your sense of humor on this site. By the way, Did you eat those big fish in the picture? I sell tents and we have a trade show I attend every year in Feburary in Gibtown, Fla. it is very close to Tampa. I work most the time when I am there but I might just look you up some time. Keep up yhe clean scans, Homer & Connie

    Gibtown - Gibsonton
    Very familiar with the area, it's has a large population for Circus/Carney people. On US41 which has a lot of areas that I have fished before.

    Yes on eating the grouper in the photo.....

    Just let me know when your down and have a little time, I'd be glad to take you out fishing and see what we can get in to...usually trout that time of year, sometimes redfish.

    If Connie comes or even not, we can at least maybe go get some lunch or dinner.

    I don't think I mentioned in my above post...the peaches slide down your throat fairly easily because the are soft and have the light syrup. So they don't hurt much, are very easy to get down and have some calorie value.

    You sound like you are on the right track and are getting a handle on the situation. This is all very dynamic and you just learn to adapt and go with the flow and what's working. The good thing you are recognizing is to change or investigate when it's not working...very good of you to keep up on this and a blessing to Connie.

    An advantage that you have and utilize is this site and the people on it that have gone through this...usually someone on here has been there done that and can share their experience.

    I think we all take pride in sharing our experiences to help others. Sometimes it works, sometimes not. But usually somewhere in the mix of replies, there lies a solution or recommendation that works and makes it easier for others.

    Best,
    John
  • adventurebob
    adventurebob Member Posts: 691
    Eating and weight
    Hey Homer,

    I don't have much to add to what the others said except that nutrition is always important. Shortcuts with ice cream and unhealthy fats will only cause Connie to feel worse. Sweets blender recipes are good solid nutrition and will put the weight on in a healthy way. The exercise is always good and will increase her appetite just keep it slow and steady so as not to burn too many calories. Weight training would be very good right now. I'd recommend resistance bands that you can get at a Big 5 or Sport Chalet type store. I haven't put much weight back on since treatment ended but feel very good. I just stopped worrying about it and began eating normally; of course still trying to get in a lot of calories but not at the risk of nutrition. Keep up the good caregiving. You're a fantastic husband.

    AB
  • sweetblood22
    sweetblood22 Member Posts: 3,228

    Sweet, I knew as I started
    Sweet, I knew as I started reading your reply who it was from before I seen your picture. I guess I know you pretty well having you help us so much and by the way I could never repay you for all the help you have given us. Thanks for the recipes, we will get started on these asap. I have a blender but I think we need to buy a food processor also to mix these properly. I guess a blender is OK if Connie drinks them, I hope they taste good because she will really like them if they do. Thank you so much Dawn for helping me so much with Connie, I guess you can sense that I need all the help I can get. You are one of the nicest people I have ever known and I will continue to pray that your hearing gets better. As you probably already know I will continue to post when I have questions for the experts. Doctors are great but they have never had cancer or treatments so this is such a great website because everyone here has first hand knowledge. I always try to watch what I say because I realize I have not had cancer and I only answer questions when I know what Connie treatments consisted of. Thanks for everything and keep us posted as soon as you find out the cause of the ear problem. Love ya, Homer & Connie

    I think they taste good.
    I think they taste good. You would probably need a high speed blender or emulsifier vs a food processor. I think for someone that has been what we have been through, it's a good investment, but of course every one is different. I know some people don't really like smoothies. Just a suggestion. I just find it the easiest way to get in optimum nutrition and get in all the servings of fruit and veg we are supposed to, without the huge effort it requires me to eat.

    And Homer, we all need all the help we can get. That's why we are all here for each other. :)

    Hugs to you and Connie.

    <3 Dawn & Nizzy too. ;-)
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Homer
    If she is like me you will not be able to force anything on her, I know it is 5 months but sometimes it takes up to a year or so for things to become to her new normal. Let her eat what she likes and as taste starts to come back more and more she will start to eat more. Her body needs to relearn what hunger is and when things taste like crap that makes it hard. Encourage her everyday as the loving caring husband you are and be excited for her when she does eat different thing or more then she normally does. Keep a watch on her health as long as she is doing good let her be but if the weight goes too far down talk to her doctor about it to see what he might suggest.

    God bless all our Caregivers
    Hondo
  • Lelia
    Lelia Member Posts: 98
    How is the eating?
    I have a couple thoughts but am hoping you both are doing well and have found some relief. I sure agree how difficult it can be to get copious calories in a normally lean person after cancer treatment. Don finished rads/chemo 5/1 and although he's able to eat by mouth, no way can he consume enough calories that way, so we use the PEG to add nourishment and for meds, which at this point are mainly ibuprofen and vitamins. Trouble is, we've never been high calorie eaters so it's been an adjustment trying to get some weight on him, if only he felt like a can of Pringles or a giant Oreo Blizzard every day. I admit I've dug out those weird Benecal packets, 330 calories per tbs, lord knows what's in there, but when I backed off PEG calories his BP plummeted and he fainted last week.

    When you get a minute, Homer, let us know how the weight gain is coming and how Connie is overall (and you too, how are you holding up? I lost 15 lbs during my H's treatment, haven't been in the double digits since my 20s and know it impacts my durability and strength but I just can't bear to eat when he can't)
  • connieprice1
    connieprice1 Member Posts: 300 Member
    Lelia said:

    How is the eating?
    I have a couple thoughts but am hoping you both are doing well and have found some relief. I sure agree how difficult it can be to get copious calories in a normally lean person after cancer treatment. Don finished rads/chemo 5/1 and although he's able to eat by mouth, no way can he consume enough calories that way, so we use the PEG to add nourishment and for meds, which at this point are mainly ibuprofen and vitamins. Trouble is, we've never been high calorie eaters so it's been an adjustment trying to get some weight on him, if only he felt like a can of Pringles or a giant Oreo Blizzard every day. I admit I've dug out those weird Benecal packets, 330 calories per tbs, lord knows what's in there, but when I backed off PEG calories his BP plummeted and he fainted last week.

    When you get a minute, Homer, let us know how the weight gain is coming and how Connie is overall (and you too, how are you holding up? I lost 15 lbs during my H's treatment, haven't been in the double digits since my 20s and know it impacts my durability and strength but I just can't bear to eat when he can't)

    Caregivers
    Lelia, I appreciate your posts to Connie and I. As you know this site is such a big help to caregivers like ourselves. I don't know what I would have done without all the advice from the experts here. Doctors know the treatments and protocol but they really don't know how it feels to receive chemo/radiation. I have tried to learn as much as possible as I want to help Connie get well but I have never received radiation or chemo either. I too have lost weight as Connie has always prepared our meals and since she has been going through treatments etc. she just wasn't able to cook and certain smells of food would give her nausea. I lived on frozen dinners for 6 months and normally we would go out to restaurants often but I just never felt like eating out if she could not be there or only be there to watch. I have noticed that I have gained weight in some areas and lost weight in others. I hope you too are doing ok as the caregiver does suffer physically, mentally and emotionally. However we have to remain strong for our spouses so they can focus on getting well. I have met so many good people on this site and I am priviledged to know you too. Stay Strong, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member
    Hondo said:

    Hi Homer
    If she is like me you will not be able to force anything on her, I know it is 5 months but sometimes it takes up to a year or so for things to become to her new normal. Let her eat what she likes and as taste starts to come back more and more she will start to eat more. Her body needs to relearn what hunger is and when things taste like crap that makes it hard. Encourage her everyday as the loving caring husband you are and be excited for her when she does eat different thing or more then she normally does. Keep a watch on her health as long as she is doing good let her be but if the weight goes too far down talk to her doctor about it to see what he might suggest.

    God bless all our Caregivers
    Hondo

    Hi Hondo, I hope your health
    Hi Hondo, I hope your health is getting better. I know you have been through so much yet you help everyone here in one way or another. Sometimes just a word of encouragement means a lot to someone seeking advice. I hope that you are able to open your mouth wider and get the dental work you need. I haven't really read whether the device was working, hopefully so. Also I read your posts recently that you were going to Honduras for treatment and vacation and I hope the treatments there were beneficial and everyone needs a vacation once in a while. I assure you I don't force anything on Connie but do try to encourage her in a positive way. I appreciate all the advice you have given both of us and will continue to ask questions as cancer continues to be the biggest challenge we have faced in 27 years of marriage. I want you to know that I have always believed in God but I have become closer to him recently and pray often now. Take care, Homer & Connie
  • connieprice1
    connieprice1 Member Posts: 300 Member

    Eating and weight
    Hey Homer,

    I don't have much to add to what the others said except that nutrition is always important. Shortcuts with ice cream and unhealthy fats will only cause Connie to feel worse. Sweets blender recipes are good solid nutrition and will put the weight on in a healthy way. The exercise is always good and will increase her appetite just keep it slow and steady so as not to burn too many calories. Weight training would be very good right now. I'd recommend resistance bands that you can get at a Big 5 or Sport Chalet type store. I haven't put much weight back on since treatment ended but feel very good. I just stopped worrying about it and began eating normally; of course still trying to get in a lot of calories but not at the risk of nutrition. Keep up the good caregiving. You're a fantastic husband.

    AB

    Weight training
    Bob, It is always nice to hear from you. I think exercise would be good for Connie and she can do that type of exercise at home. The heat really zaps her strength so she needs air conditioning for anything strenuous. I hope everthing is going ok for you too and hope to continue to hear from you my friend. I think you are one of the most positive people I know. Take care, Homer & Connie