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Thread: Jim's Update

  1. #511


    Sugar is a sour subject indeed! It's my "drug of choice" so I totally understand Jim's love of sweets. I also know it doesn't do those of us with cancer one bit of good. I struggle with it myself. I gave up my 1/2 tsp of sugar in my morning tea but I still get a longing for something sweet after dinner. My functional medicine doc suggests eating carefully 5 days a weak and then just "live life" the other two. That works pretty well most of the time.

    Well, I am taller than Jim! It's crazy how he's lost so much height in such a short time. My mom was 6' tall in her prime but was 5'8" or so when she passed.

    I hope the humidifier helps some. I use mine for dry eye syndrome and I like what it does for my skin as well. I'll keep my fingers crossed.

    Hope Jim rests well the next few days. Hope you can, too!


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  3. #512
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    callyflower ~

    At Jim's infusion today, I asked him to ask his nurse about using a humidifier, and she said, "It might help."

    When he told her about the hard globs he's coughed up and the amount of coughing, as well as the blood, she said, "That's a common side effect of Opdivo. You'll only get some relief with Biotene, and it won't last. That's the case with just about any treatment normally given for dry mouth, which aren't actually designed to treat Opdivo dry mouth."

    So, it seems, as you said, side effects are cumulative. The more infusions, the more the chances of side effects or the worsening of side effects.

    I ordered a humidifier for Jim today. It's worth a try, and maybe it will help him. But, the nurse's response, to me, is basically telling us "this is what happens, and there's not much you can do about it."


    Jim has a teaspoon plus of sugar in his tea, at least 3 times a day. When we have them, Jim eats a whole Zen muffin, sweetened with grape fruit juice only, plus fruit, but still contains 14 grams of sugar per muffin. That's 3 + tsps. A whole banana has 14 grams of sugar. The little jam thumbprint cookies I get from Mother's each have 7 grams (about 2 tsps ) sugar. When he has one with his tea, he has two.

    At the hospital today, Jim went to the gift shop, because he arrived early and found a bag of "Old Fashioned Hard Candy." He bought the bag, without looking at the nutrition panel, of course. Ingredients: SUGAR, CORN SYRUP, Red, Yellow and Blue Dyes.

    Last Christmas, he asked me to order him some fruit tarts and marzipan made in England. I relented. When they arrived, I looked at the sugar content in the tiny tart ~ 25 grams! I said to Jim, "Would you sit down and eat 6 teaspoons of sugar? Because that's what you're doing right now." That was it! Gone in the trash.

    I comforted him by telling him that I ordered them for him for the same reason I threw them out, "Because I love you."

    It's not uncommon for Seniors to develop diabetes, even people, who don't have cancer or other serious illnesses. So, we both need to be cautious about our sugar consumption. And Jim's tends to be excessive, if I don't nag or remind him about how much sugar he is consuming. The odds have never been in his favor, and thankfully, he's beating those odds. I just want it to stay that way.


    Jim's nurse decided to measure his height today. In January, 2017, Jim was (as always) 6 feet tall. His height then dropped to 5'11" and remained there until today. He is now about 5'10". I didn't believe that, so we measured him at home, and yes, he's 5'10".

    To me, he's a giant though, and he said, "You keep asking me if you're shrinking. Looks like we both are!"

    At this rate, we'll be microscopic in a few years!

    That's not good. Not good at all.

    But we know the remedy, which would be suggested by an endocrinologist or an orthopedist. Boniva or Prolia, both offshoots of Fosamax. I've researched these drugs, and I know what they've done to my friends. Not going there.

    His weight is down to 156 lbs, which isn't a good trend, of course. We attribute this to his appetite loss, disinterest in food, until I put food in front of him, and his erratic sleeping, which limits his time to eat. He's also been inconsistent with drinking his Orgain, which I will now start nagging him about again.

    It's definitely not fun to be the nag and spoiler of pleasures. But that is my responsibility to Jim, as his wife and caregiver. Love isn't always easy, but it's always right. As much as he might fuss and grumble, Jim knows this to be true.

    Thank you for your suggestions, callyflower, and advice. I need all of the guidance I can get.

    Thank you all for your continuing love, prayers, support, and encouragement.

    Love & Light,

    Sorry I haven't been as active here Rose. I'm just busy working but I wanted to mention something that helps me curve my sweet tooth This is special health supplement chocolate. I get 91% dark. My 2 friends who are diabetic also eat this and have zero blood sugar fluctuations from it. This might help Jim with cravings for sweets. You can also try a machine called "Yonanas" which turns pure fruit into an ice cream consistency. There are lots of alternatives to sugar. Tumors feed on sugar so your instincts here are spot on.
    I met a stage 4 brain cancer survivor 2 days ago as a result of my film work. They thought she was dying and did chemo and brain surgery on her which left her with effects similar to a very small stroke but she is completely in remission and able to work full time. I pray Jim will soon be in remission like her!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films!

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  5. #513
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    I feel we are being tricked into eating sugar sometimes. There are so many things with large amounts of sugar that claim to be healthy. And the problem also lies with the fact that you have to read the servings and serving sizes. A drink may look low in sugar till you realize you have to multiply the sugar by 2 or 3 for the servings in the container. Then when you decide you want less sugar you end up dodging the fake sugar! So hard to navigate it all and I can see why so many people are fooled into eating more than they realize Unless you take the time to research everything you put into your mouth. We try do do most things just in moderation. A couple things I completely avoid is hydrogenated oils and fake sugar. I do make "ice cream" from a frozen banana (in the bullet) and some chopped up cocoa nibs or just dark chocolate. I LOVE my dark chocolate! Praying the dry mouth is lessened with the humidifier.
    Mary Grace

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  7. #514
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I hear you!! Jimís British, and Iím German, both known for having a sweet tooth! Jim grew up on Christmas cakes full of fruit and sugar, eclairs, cream puffs made with double Devon cream, marzipan, etc. I grew up on streusel and Black Forest cake. Just visualizing my elders baking these delights and their aroma, I added 2 pounds to each hip!!!

    I gave up sugar in my coffee and have now switched to decaf, which I never thought Iíd be able to do. I cave sometimes and have 1/2 a muffin in the morning, because itís there and easy, since Iíll likely wait a few hours before I can make a meal (sleeping men).

    For awhile, we indulged in So Delicious Cashew ďice cream.Ē That should be illegal. I started to gain weight, which I donít need to do. So, although we have it in the freezer, I have one tablespoonful, no more than twice a week.

    To quell my sweet and chocolate craving, I eat a handful of semi-sweet chocolate chips, sweetened with Stevia. After I eat Mexican food, I HAVE to have chocolate!

    Like many people, I go for comfort food during times of stress and depression. For me that is Mac and Cheese, and anything sweet and chocolate. Iíve gained and lost 40 pounds three times, since Michael passed, during which time weíve nearly lost Jonathan 6 times. With Jimís cancer diagnosis, I am struggling to not do that again. I refuse to weigh myself, because I know it might cause me to spiral. I gauge my weight loss by how my clothes fit. I have two sizes, and Iím working toward getting back into my smaller jeans.

    I just checked on Jim, who woke up from his nap. A cup of tea and a whole carrot muffin. Thatís 18 grams of sugar. I said nothing.

    He wants to gain weight, so I get it. But, the real reason I said nothing is because on his own today, he drank an Orgain shake. So YAY!

    As to our height loss, Iím sure itís that our bones are deteriorating. Jim has been diagnosed with osteoporosis, based upon his scans, with lower back/spine problems. I donít need a scan to know that I have it. We also both have RA. This is one of the outcomes of aging. I remember watching the elder women in my family shrink.

    Additionally, Jim and I have been working our bones for a long time. Jim with scaffolding, and me with lifting and carrying my boys and their chairs. And we havenít stopped really, as we are still exerting ourselves in lifting Jon in bed. We are ďopen 24 hoursĒ and have been for decades. That is probably wearing us out.

    I feel at least 10 years older than I am chronologically. At least. One of my dear friends just turned 95, and she is in far better condition than I am. She still does yoga!

    Iím anxious for the humidifier to arrive. I think that the biggest benefit to Jim will be for his sinuses, because he has sleep apnea. He sleeps with his mouth gaping wide open. I told him the other night that he looks like the painting ďThe ScreamĒ without the horror. Naturally, his throat is going to be dry.

    We ordered the delivery of hard candy made with CBD oil. Jim had only one of these as a sample, and it worked a little bit. Iíd rather he have CBD oil in his candy, which Iím sure has sugar in it too, than just plain sugar and food coloring. That bag of SUGAR JUNK is going into the trash, and shame on the hospital for selling it!

    I send you lots of positive energy in your endeavors to curb your sweet toothís beckoning. Itís not easy to do. I think your functional medicine doctor has a good strategy. And that speciality is new to me! I think we need to find one of those for our family!

    Okay Ö I babbled Ö again. So I will reply separately to funnylegs4 and Mary Grace.

    BE WELL and BE HAPPY to ALL!

    Love & Light,

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  9. #515


    Well, as we age, the bones can deteriorate, but mostly it's the loss of "juice" in the discs in our back. They dry out and flatten. Since we have about 3 dozen of them, the inches add up to a significant loss of height. Jim must be drying up all over his body right now.

    To my horror, my mouth has begun to hang open at night as well. I wake up with my tongue as dry as a stick! It's really nasty. Sometimes I put a little pillow under my chin to help keep my mouth closed!

    My daughter and I were in Ft Worth today for appts. When we were done we stopped at a taco shop and I got two fried avocado tacos: corn tortillas, beans, battered and fried avocado slices, cheese, pico, lettuce and a creamy dressing. Outstanding! I didn't even want dessert! I know you are avo fans-maybe you can modify this and make it at home. I plan to do so!

    Have a sweet weekend! ;)
    Last edited by callyflower; Yesterday at 05:43 PM.

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  11. #516
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Wink It's Long!

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Are you working on a new film? How did the New Mexico showing go?

    What are the ingredients in Choconuvo? Iíve been able to find nutrition information, but not the ingredient(s).

    We have the Yonanas machine, a Christmas gift to us about 2 years ago. I just havenít had the time to set it up, learn how to use it, etc. I know that sounds silly, but itís probably close to the last thing on my list of things to do. I used to make banana ice cream by freezing slices of bananas, then blended them in a very small mixer (which came with other attachments).

    How wonderful for the woman you met, who is in remission! Thank you so much for your prayers! We do feel that Opdivo is the only option for Jim to achieve remission, and Dr. K is enthusiastic about the outcome so far. One day, I pray that I will be able to update here that Jim is ďcancer-free!Ē

    Mary Grace ~

    I agree with you that sugar is in far too many products, and that labeling is deceptive. For example, the Zen muffins. The label says 7 grams of sugar. That might be all that a person reads on the label. But if you read the top of the label, the serving size is 1/2 muffin. Realistically, how many people will only eat 1/2 a muffin? We do, because I read labels diligently.

    And salt! Oh my! Salt is in everything too! Recently, I watched a panel discussion, where one panelist said that someone asked her, ďWhy does Kentucky Fried Chicken taste so good?Ē

    She replied, ďItís the SALT!Ē

    We eat meat alternatives, like Field Roast, Yves, Tofurky and Gardein. We have to watch our portions, because of the salt content.

    The same is true of Amyís Organic products. Her soups have nearly 1200 grams of salt per can, so the serving size listed is 1/2 a can. Even her lower sodium soups have too much sodium in a full can. Yet, when I eat 1/2 a can of her low sodium soup, it is still as tasty as the full sodium.

    You know from Kathleenís diet needs how difficult it can be to avoid all gluten. Then you factor in sugar and salt. Itís a lot to manage. And most people just donít pay attention, like we do.

    I donít add salt to our vegetables or any of the meals I prepare, because thereís plenty of it elsewhere in our diet.


    Last night, Jim had a CBD oil candy, only half, and he was able to sleep for several hours without gasping. His mouth and throat were dry when he woke, because he sleeps with his mouth wide open. He had the other 1/2 of the candy, and he felt relief immediately.

    This morning, he said to me, ďI havenít been coughing constantly. My throat isnít sore.Ē

    Then he mused, ďOne of those CBD candies costs more than that whole package of candy I bought at the hospital gift shop.Ē

    I peered over my glasses and smiled, ďThatís because the hospital candy is junk, and the CBD is medicine.Ē

    He brushed his teeth (he has dentures, but two stubs to hold the bottom denture in place) with Biotene toothpaste. Within minutes, his mouth was dry.

    I said, ďThatís because Biotene is chemicals, including polyethelene glycol. (A plastic product) So, weíre not going to use Biotene or any other dry mouth wash again.Ē

    Then, I had this thought: We have CBD oil tinctures (for under the tongue). Maybe a couple of drops of that would do the job, and we can eliminate the candy. I think weíll give that a try tonight.

    We have read, and I believe that Jim is testimony to the validity of this claim, that CBD oil fights cancer. You canít OD on CBD. There are no side effects. In battling the Big C, it seems that more CBD is better.

    It was so wonderful to not hear Jim hacking, gagging, and struggling today. He only had one candy with 10 mg CBD. What more evidence do we need?

    callyflower ~

    Thank you for explaining our shrinking! That makes sense. When I told him, I said, ďWeíre losing our juice!Ē

    When I mentioned it to Jonís PT and Jonís nurse today, they both confirmed that this is part of the aging process. Both of them were surprised that Jim and I have lost 2Ē in the last 2 years. But when I mentioned our RA, they both went, ďYeah, that could speed up the process.Ē As well as chemo and Opdivo for Jim.

    And Iím very post-menopausal, so I'm just a pile of dust. Thatís why I get up every morning, have 1/2 of my orange juice, put on my walking clothes, and walk at least a mile. I get plenty of exercise every day, just doing laundry, cleaning the house, lifting Jon, going up and down and up and down the stairs.

    My skin is dry and tears easily, so Iím drying up too. As I said, ďdust.Ē

    I just ordered more CBD oil, so Iím going to increase my daily dose too.

    Iíve seen ads for a chin strap to wear at night (or while sleeping) to keep the mouth closed. Iíll see if I can find it for you on the internet. Iíve thought about this for Jim, but I know he would resist it.

    He tried those nasal breathing strips years ago, and it didnít work. Well, no, because he has serious sinus problems and has for most of his life. He was a scaffolder on old buildings, estates and castles in England. Imagine what he inhaled all of those years!

    Those tacos sound scrumptious! Curious what kind of batter was used for the avocados. We love tacos!

    Fun Fact:

    My first job was as a Taco Tucker, a name invented by me and the two other gals working the stand. It was the first taco stand in our city. We had a great location, across from the high school and walking distance from the junior college. Because we ate the food we made, we served only the best to our customers.

    With the broken taco shells, instead of wasting them, we put them in bags, lightly salted them, and then we sold our refried beans with cheese for dipping. Then we started adding things like black olives, chopped green onions.

    We tried to convince the owner that we needed to expand, because competition was coming. Namely, Taco Bell.

    Finally, he told us one day that he couldnít afford to keep Taco Plaza (our name) open, because Taco Bell was selling lesser quality meat and cheese at lower prices. And, they stole our bean/cheese/chips idea!

    And we were just about ready to sell him on adding brownies and chocolate chip cookies to our menu!

    I remember driving home toward the sunset that night and wondering what life might have in store for me. Little did I know Ö

    And, if itís a taco, I have to have chocolate for dessert. And, yes, we brought our own home baked brownies and chocolate chip cookies for ourselves.

    Thank you all so very much for listening, reading my novellas, and for your prayers, support, friendship and love.

    We love you, and we give thanks for the blessing you are in our lives ~

    Love & Light,

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  13. #517
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    Hi Rose and everyone!
    We are all in the same boat. This week, I went to my GP for back pain (yep, I'm a disability Mom) and they measured me. I'm now 5'6" - I used to be 5'8"! Oh well, I'm 63 so I guess it comes with the CV. Got an rx for physio so maybe that will make me taller LOL. As for the sugar, I'm bad - I love to bake. But if I want to be 'good', I will have dark chocolate.

    Nick is loving his new room. He's going tomorrow to the Liverpool football club pub in Ottawa for the big game with Jim, my brother in law and about 100 other L'pool fans. It will be an exciting day!

    I'm at the cottage to oversee kitchen renovations, long overdue. Our wall and floor were rotting from a leak in the ceiling so everything has been repaired now and there's a whole new look now in the kitchen (the old one was from my grandmother's days in the 1920s).

    I'm sitting now listening to the waves on the beach at our lake in the Laurentians (north of Montreal). Very peaceful.

    Love to all, Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

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