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Thread: Jim's Update

  1. #571
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I suspect that the results will be delayed due to the holiday. The waiting can be treacherous, but we're just trying to ignore it.

    I'm sorry that you had a scare, but I am so very grateful that you're okay.

    We have talked about giving Jon CBD oil, but we haven't made a decision yet. We want to see if we can get him stabilized on the new brands of his meds, before we introduce anything new. I know that most people don't have a negative reaction to CBD oil, but Jon is not most people.

    That's unfortunate that your annual July 4 party was cancelled. I hope that you were able to celebrate and enjoy the day anyway.

    Love & Light,



    Rose
    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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  3. #572
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    Oh Rose, I am just catching up on everything about Jim, Jon and you. What a time. I'm so sorry that Jim has lost weight (but encouraged that he's gaining some back!) and I hope Jon's insomnia doesn't last long! I wish the GoldCaps were not an issue. I'm so sorry that's just one more thing. It does seem like the Rose magic is working though and that your cooking and steroids are helping. We are all well - Nicholas is of course cheering for England in the world cup. But he's glued to every match and he's loving the spectacle. Our new puppy Daisy is learning to swim and she's growing! It's been extremely hot here - many people have died from heat in Montreal - vulnerable people without air conditioning. It's terrible. But today, the north wind began to blow and it's actually quite chilly out now. Jim and I are at the cottage and we even have a fire in the fireplace. Quite a change from the last week. Our Natalie is coming home for a week from Milwaukee in early August. Can't wait to see her! I send you all my love, Rose - I pray every day for you, Jim, Jon, and Angel Michael. Blessings to you all. Donna xoxo
    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: http://www.donnathomson.com


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  5. #573
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    ((((((Hugs to All)))))) ~

    Donna ~

    Jim and I talk about Nicholas every day, as Jim's watching the World Cup. England is really doing well! What does Nick think of the officiating? Jim says it is horrible. I watch some of the games with Jim, but I find soccer to be absolutely boring.

    I'm so glad that you've had a cooling trend. It was 115 here today, and it's 101 now after 9 p.m. Same thing tomorrow, and then upper 90s for next week.

    Oh, please post a photo of Daisy swimming!!! Awww... I wanna puppy! No, I don't. Yes, I do. No, I don't. Aaaggghhh!

    August can't get here soon enough for you, I'm sure. I know you will have a wonderful visit with Natalie.

    I found a place where Jim can get his capsules, but it's nearly an hour drive to/from. No home delivery. John occasionally works in that area, so he's offered to get the capsules for Jim the next time he's there.

    Jim was going to try to go today, and I put the kibosh on it. A) The heat. B) If we have a power outage, and he's not here, Jon and I are stuck. Jon's mattress would deflate immediately. I couldn't call Jim, or John, or even 911, because our land line goes dead with a power outage. Of course, Jim would have the cell phone. C) This dispensary is quite busy, and Jim doesn't need to be in a closed in place with a bunch of people, even wearing a mask. D) The farthest Jim has driven in the past 3 years is 4 miles to the doctor/hospital. Two hours of driving, plus standing in line, would wear him out completely.

    Jon's sleep has improved, thankfully. However, he's been retaining fluid, and we haven't been able to turn him. We cancelled John's visit yesterday. Tonight, I decided that Jon's catheter was out too far, so I reinserted it, and he immediately gushed out 300 cc of urine! This catheter has been very uncomfortable for him, and he can't keep his hand away from his Guy, so we have to use soft restraints to protect him. We really really really don't like to do that. But he's been bleeding, and the cath keeps sliding out. While there is no blood in his urine after the reinsert, he's bleeding from his urethra, which I think must be an internal irritation around the giant fire hose in his penis. Breaks our hearts.

    Jim is gaining weight, and he's being diligent about drinking his protein shakes and snacking. Through his delivery dispensary, I found CBD hard candy to help with his dry mouth. He says that the candy is better than what he was using before, so that's a plus.

    Enjoy the beautiful lake, and your new kitchen, and the lovely weather, and DAISY!

    Our love and prayers to you and to all, with gratitude for your continuing support for us.

    Love & Light,



    Rose
    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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  7. #574
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Donna ~

    Jim and I talk about Nicholas every day, as Jim's watching the World Cup. England is really doing well! What does Nick think of the officiating? Jim says it is horrible. I watch some of the games with Jim, but I find soccer to be absolutely boring.

    I'm so glad that you've had a cooling trend. It was 115 here today, and it's 101 now after 9 p.m. Same thing tomorrow, and then upper 90s for next week.

    Oh, please post a photo of Daisy swimming!!! Awww... I wanna puppy! No, I don't. Yes, I do. No, I don't. Aaaggghhh!

    August can't get here soon enough for you, I'm sure. I know you will have a wonderful visit with Natalie.

    I found a place where Jim can get his capsules, but it's nearly an hour drive to/from. No home delivery. John occasionally works in that area, so he's offered to get the capsules for Jim the next time he's there.

    Jim was going to try to go today, and I put the kibosh on it. A) The heat. B) If we have a power outage, and he's not here, Jon and I are stuck. Jon's mattress would deflate immediately. I couldn't call Jim, or John, or even 911, because our land line goes dead with a power outage. Of course, Jim would have the cell phone. C) This dispensary is quite busy, and Jim doesn't need to be in a closed in place with a bunch of people, even wearing a mask. D) The farthest Jim has driven in the past 3 years is 4 miles to the doctor/hospital. Two hours of driving, plus standing in line, would wear him out completely.

    Jon's sleep has improved, thankfully. However, he's been retaining fluid, and we haven't been able to turn him. We cancelled John's visit yesterday. Tonight, I decided that Jon's catheter was out too far, so I reinserted it, and he immediately gushed out 300 cc of urine! This catheter has been very uncomfortable for him, and he can't keep his hand away from his Guy, so we have to use soft restraints to protect him. We really really really don't like to do that. But he's been bleeding, and the cath keeps sliding out. While there is no blood in his urine after the reinsert, he's bleeding from his urethra, which I think must be an internal irritation around the giant fire hose in his penis. Breaks our hearts.

    Jim is gaining weight, and he's being diligent about drinking his protein shakes and snacking. Through his delivery dispensary, I found CBD hard candy to help with his dry mouth. He says that the candy is better than what he was using before, so that's a plus.

    Enjoy the beautiful lake, and your new kitchen, and the lovely weather, and DAISY!

    Our love and prayers to you and to all, with gratitude for your continuing support for us.

    Love & Light,



    Rose
    I realize it may be expansive for both you and Jim to have cell phones but you should have an alternative to the landline. Especially with Jim and Jon's medical needs. After my fainting spell I invested in a small device I can wear which connects to 911 in the event that I'm alone and need help. Its like Life Alert but cheaper. You press a red button in the center and it connects you to 911. My other friends with medical conditions had them and it seemed like an excellent idea. It makes me also feel safer when I'm with my friends who have medical conditions because if someone like my friend with the stroke were to go into a distressed state again I wouldn't be just helplessly watching it happen and could actually do something about it, and its faster than my cell. Not sure if I'm repeating myself from an earlier post here but if I remember the name of the little device I will link it.
    Glad Jim is doing well. Sorry about Jon's Cath. At least the pee comes out rather than staying in. OW! I just realized what "indwelling" means when you wrote that. Poor guy. Such a sensitive area. :(
    Last edited by funnylegs4; 07-07-2018 at 09:13 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #575
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    You have a good point, and we should probably have 2 cell phones. Our cell is so old, it's practically an antique. We only use it so that we can stay in touch, when one of us is out and about. But a potential power outage fear has brought this to our attention. I would be interested in the device you use, so please let me know the name of it.

    Yes, Jon's undercarriage is certainly sensitive. He has the cath, which leaks and causes an ongoing wound on the bottom of his testicles. This has been going on for years, and we just can't seem to find a remedy.

    We were going to contact John about potentially turning Jon today, but we agreed that it would disturb his cath, which has been bleeding all night/day. I'm sure that his urethra has been traumatized, and we just need to keep it as still as possible to let it heal. So incredibly uncomfortable for Jon and frustrating for us.

    It's also not good that we can't turn him to change his wound care pads. So, we're in a pickle now.

    Hope that you and all of our friends here are enjoying a pleasant weekend.

    Love & Light,



    Rose
    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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  11. #576
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    You have a good point, and we should probably have 2 cell phones. Our cell is so old, it's practically an antique. We only use it so that we can stay in touch, when one of us is out and about. But a potential power outage fear has brought this to our attention. I would be interested in the device you use, so please let me know the name of it.

    Yes, Jon's undercarriage is certainly sensitive. He has the cath, which leaks and causes an ongoing wound on the bottom of his testicles. This has been going on for years, and we just can't seem to find a remedy.

    We were going to contact John about potentially turning Jon today, but we agreed that it would disturb his cath, which has been bleeding all night/day. I'm sure that his urethra has been traumatized, and we just need to keep it as still as possible to let it heal. So incredibly uncomfortable for Jon and frustrating for us.

    It's also not good that we can't turn him to change his wound care pads. So, we're in a pickle now.

    Hope that you and all of our friends here are enjoying a pleasant weekend.

    Love & Light,



    Rose
    Hi Rose,
    Here it is https://www.hsn.com/products/911-hel...bundle/8695512 I couldn't think of it because the name was so simple. I can tell you it really works because I was a complete idiot the week after I got it, and I pressed it by mistake. It connected to 911 almost instantly. If you press it by mistake just say to the operator/EMS "I was testing my emergency pendent. False alarm." :) Battery should be changed once every 2 weeks. You should get new cell phones too!
    Jon RE: OW!!! I wish I could make his pain stop! :( Would Ice packs help?
    Last edited by funnylegs4; 07-07-2018 at 08:32 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #577
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    ((((((funnylegs4))))))) ~

    Thank you for the link. Very helpful, and probably something that would be beneficial for us.

    OUR UPDATE

    Long weekend for us. HOT! 115 on Friday, today was 97, and it will continue in the 90s until the weekend.

    Jim cannot seem to gain weight. He's not losing but not gaining. He's worried and frustrated. He's upset that he's lost muscle tone in his legs. I think much of that is from lack of exercise. He spends most of his time either sitting or prone.

    Jim sees Dr. K on Weds. morning for his scan/MRI results, blood draw, and infusion. We pray for good news.

    Jon's urethra has stopped bleeding. I don't think that he would tolerate ice on his penis. He's not fond of the 4x4 split gauze I put underneath it to catch some of the leakage. We find it on the floor frequently, if both of his hands are not restrained. He's probably thinking, "Haven't you done enough to my penis, with this giant cath and balloon? Now you're putting something under it, and a washcloth on top of it, and keeping me from it! Hands free, here goes the gauze!"

    He has been running a temp around 99.5 for days, and today it elevated to 101.4. I gave him a cool bath and stripped him naked as a jaybird.

    Then, John arrived. Jon's sad face beamed when he saw his bro' and best bud! I can't describe the feeling I have when I witness them together. There is so much love between them.

    John teased Jon and said, "I didn't know it was nudist day! Should I take off my clothes too?"

    Jon was stiff, since he hadn't been turned for a week, and it was painful, but once he settled in he was okay, and John continued to keep an eye on Jon for me (as I'm on the other side caring for Jon's back and bottom). John constantly reassures Jon, comforting him. And Jim was next to John, protecting Jon's legs.

    His testicle wound is much better. All Hail Butt Paste! Still some smelly discharge, but given that it's been a week, it was remarkably better.

    I'm sure Jon feels more comfortable now with a bath and clean linens and wound pads. And he got to see his best friend.

    Tomorrow, Jon will enjoy a visit from the Podiatry Team. Two pretty women, who adore him and fawn all over him, flirt with him, as he becomes shy (that's his trick to get more lovin'!) He's been falling asleep around midnight and waking up around 8 or 9 a.m., so he should be awake for their visit this time. I have been soaking his toes in salt water for weeks, and the granuloma under his nails is finally coming off. This will make his nail trimming easier for the gals.

    Tonight, I will email Jon's GI to schedule his visit. I decided to wait until we had other stuff out of the way, and every day could then be open for the GI.

    We keep on keepin' on ...

    Thank you all so much for your support, love, prayers, healing, positive energy. Know that you are in our prayers too, and we give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    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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  15. #578

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    Dear Rose,

    Sending prayers up for Jim’s appointment tomorrow. Hope all is well and it’s nothing but positive news.

    Marcie

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  17. #579
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    ((((((Marcie))))))) ~

    Thank you so much! How are you, your husband and your sons? You're always in my prayers!

    Love & Light,



    Rose
    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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  19. #580
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    Thumbs up Winning!

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

    Jim and I are overjoyed with the results of his CT scan and brain MRI. Dr. K is thrilled and refers to Jim’s progress as “unbelievable.”

    BRAIN SCAN

    All clear! Dr. K said, “I’m not even going to bother with that any more, unless you develop symptoms.” So no more jarring MRIs.

    We’ve been milking the joke, “I had my head examined, and there’s nothing there!”

    CT SCAN

    The tumor is continuing to shrink, albeit more slowly than previously, and the core is dying. As with Jim’s last scan, Dr. K said that the blasting of the core is more significant than the outer diameter of the mass.

    Other “nodules,” which haven’t been labeled as cancerous are “stable.” Dr. K said that means that Opdivo is keeping them in check.

    Heart, kidneys, liver, adrenal gland ~ all in good shape.

    Prostate still enlarged but not problematic. Jim is back on his Saw Palmetto, per my urging, and it has helped to slow down his hourly trip to the commode.

    He still has gallstones and diverticulitus. Some scoliosis is noted.

    VISIT WITH DR. K

    Jim calls Dr. K his “bud” now, and he says the only thing missing is the beer!

    Dr. K had been on vacation and was catching up. He hadn’t looked at Jim’s results yet, so he looked at them the first time with Jim. His first comment: “WOW!”

    He said that Opdivo is definitely continuing to kick the cancer cells to the curb, and he assured Jim that the slowing of shrinkage is typical and not concerning. He said Opdivo is doing its job very well, and it may become more aggressive again.

    Appetite and Weight Loss:

    When Jim told Dr. K that he had lost his appetite and taste buds, thus, shedding 10 pounds, Dr. K said, “Why don’t you try cannabis?”

    Jim grinned and clapped his hand on Dr. K’s shoulder. “I’ve been taking cannabis since February 2017. In fact, this hard candy in my mouth right now has 10 mg of CBD oil in it. It’s the only thing that helps my dry mouth. I also take CBD and THC capsules. I haven’t been able to get the THC capsules since the new laws came into effect.”

    Dr. K nodded his head, “That makes sense. It’s quite possible that the CBD and THC are helping Opdivo do its job and keeping you healthy through it all.”

    To hear that confirmation from Jim’s doctor really tells us how wonderful Dr. K is. He said that this is what is setting Jim apart from other cancer patients, who aren’t taking CBD and THC. He can’t prescribe it, but he is endorsing it and telling Jim to continue taking the oils.

    About Jim’s Other Doctors:

    Jim shared that the radiology oncologist, Dr. D, nearly pulled off his ear to look for Jim’s radiation rash. Then she said to Jim, “I don’t see any rash.”

    Jim told Dr. K, “My wife said ‘Stevie Wonder could see your rash!’”

    Dr. K laughed.

    Jim also shared that Dr. D said, “You can’t get cancer from chemo!”

    Dr. K was stunned. “She said that?! Of course, chemo can cause cancer. I can’t believe she said that! I mean, I believe you, of course, but that’s just … well, she’s wrong. It can and it does.”

    “My wife looked it up on line, and she printed out several pages out of thousands stating that chemo can cause cancer. And my wife is convinced that after my first headache with Gemcitibine and the rest that followed with 5 more infusions, it caused the metastasis to my skull.”

    Dr. K replied, “That’s possible.”

    So, if it’s possible, then it’s possible that Dr. P is responsible for the metastasis to Jim’s skull. First Do No Harm. She gave him brain cancer!!!!

    Jim also opened up about Dr. P, and that on his last visit with her, he asked her to let him try Opdivo again. He’d brought in an article I’d found by a rheumatologist, who said that if death is the only option, RA patients should try Opdivo and manage flares with steroids.

    Dr. P refused to give Jim Opdivo and told him to get a second opinion.

    Dr. K said, “All doctors see and do things differently.”

    Jim responded, “Yes, and that’s why I’m here with you now. I’m so grateful to you.”

    INFUSION PALS

    The Bell rang today for two blessed patients, both men about Jim’s age. One of them said to Jim, “I don’t have to have any appointments for 6 months!” Jim congratulated him and said he hoped that he would be able to say that too someday. The man nodded, “Me too, buddy.”

    SUPER SURVIVOR JIM!

    Sounds so good!

    NEXT APPOINTMENTS

    Infusion: 7/25 Dr. K visit: 8/15

    Thank you all so very much for your prayers, love, support, advice, encouragement, positive, healing energy and walking beside us on this journey. You and your loved ones are in our prayers always.

    Love & Light,



    Rose
    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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