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Thread: Jim's Update

  1. #911
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    Oh dear Rose,
    I echo funnylegs4's comments and ideas - to 'try' one treatment. I know he has had one already and that it was awful. But that was before Jim started exercising. Perhaps the exercise will make a difference. My heart just breaks for Jim and for you.

    Rose, I know that when birds visit Michael's memorial, you say hello and think of them as messengers. Here is a barred owl who visits us regularly - Jim took this photo today. Isn't he beautiful?
    owl.jpg

    I hope that Jim is able to relax and feel confident in his path forward - I hope and pray that you have a few days of rest with Jim before you absolutely have to make these serious treatment decisions.
    Sending love and prayers every day,
    Donna xox
    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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  3. #912
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    Default Decision Made

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

    You may need to take several breaks, while reading this. By the end, I guarantee you that youíll have the full story!


    OPTIONS

    ANN ~

    Thank you for your hugs and prayers. The only other option, which was presented by Dr. P in January 2018, is Taxol. Dr. K also mentioned it, until Jim told him that he wanted to try Opdivo again.

    Dr. K isnít a huge fan of radiation, but in Jimís case, he sees this as the best option to eliminate the tumor. The size, structure, and position of the tumor makes it a good candidate for radiation. Lack of metastasis is another consideration. If cancer was spreading, they might suggest Taxol again.

    Since his bone marrow biopsy results do not indicate an underlying cause for his WBC cratering, the onus is placed on Opdivo, thereby eliminating Opdivo from the treatment list.

    TREATMENT

    funnylegs4 ~

    Yes, this is Jimís decision to make, but as a family unit, it is one in which we all need to participate and discuss. We each have to think about the impact upon the other with the final decision.

    This morning, I picked up Jimís Tylenol with Codeine (aka Tylenol 3) and Prednisone. These are the meds Jim has been instructed to take 1 hour prior to the treatments. Right before the treatment, he will take Promethazine with Codeine syrup to stifle coughing. He will also take a THC capsule later in the day/evening for pain.

    The treatment will take 45 minutes to 1 1/2 hours. That is a very long time to hold your arms above your head, even if youíre in good shape. (With the exception of Dwayne The Rock Johnson, of course!)

    Hereís what Jim has to do for these treatments, as he and the nurse and tech have described it to me:

    In a hospital gown, Jim lays on a hard, flat surface. Wedges under his: neck, knees, ankles. Back flat against the surface, where he has a bruise from the simulation. A mold which was made after the simulation is fitted over his torso, then bolted down so that he is immobile. This is where a cracked rib can occur. He raises his arms over his head. X-rays and CT scans are taken. The precise location of the tumorís target is identified. Radiation is applied at a ďhigh dose,Ē per Dr. F.

    Jimís lack of motivation to exercise is principally caused by his overwhelming fatigue with the low WBC and RBC, the cancer, the RA, and all of the drugs heís been given, as well as his age, I guess. He longs for the days when he was fit and mourns the loss of his muscle tone. As you know, I feel the same way about my deteriorating spine. Aging can be very difficult.

    DECISION MADE

    Donna ~

    The owl is gorgeous. What an expressive face. You definitely have a messenger there filled with spirit and wisdom. Birds are incredible parents and partners, with the exception of hummingbirds, where the female does everything after mating.

    We havenít started exercising yet. Jim hasnít had a treatment yet. He had the ďsimulationĒ or ďstagingĒ for the mold, which will be used in the treatments.

    Last night, Jim apologized about his announcement, and he knew that it knocked the rug out from under my feet. He was just feeling overwhelmed and fed up. He knows that I fully understand this.

    He said, ďI want to get the radiation treatment. Iíve gone this far and endured all the rest of it, and with your help and care, Iím doing pretty well. I know you will take amazing care of me. I just donít want to burden you. But I can see it will burden you no matter which way we go. Iím taking one for the team. Iíve got drugs and other stuff for the pain. If this works, I could live a lot longer. Iím not ready to leave you and Jon.Ē

    ďAre you absolutely sure? Donít do this just for us.Ē

    ďIím doing it for us: you, Jon, and me.Ē

    THE PHONE CALL

    At 9 a.m., we got a message from the Rad Onc department that they wanted to schedule Jim for his first treatment on Monday, March 25 at 11:00 a.m.

    I asked Jim, and he said, ďLetís get it over with, so I donít have to lay around thinking about it.Ē

    I spent most of the day on the phone talking to the Rad Onc nurse, radiation coordinator, radiation tech, etc.

    Dr. F is out of the building, goodbye, gone boy. Covering for him were two Rad Oncís from City of Hope. Oops! That was for this week, not next week. Next week, Dr. D, the dreaded Dr. D, is covering for Dr. F. Another doc from USC will be covering the week of April 1.

    This means that Dr. D will be reviewing all of Jimís treatment and test results next week. Typically, the attending physician would talk to the patient, but I made it explicitly clear to everyone today, ďJim doesnít want to talk to Dr. D.Ē They all said, ďI know.Ē

    Thinking about this, however, who is really in charge of Jimís treatments? The techs who carry out Dr. Fís plan. The doctor has nothing to do with administering the treatments.

    The tech, who treated Jimís brain neoplasm, is on board to treat his lung tumor. The neoplasm is gone, so this tech has a good track record with us. They know and like Jim, as does everyone he meets, because heís just a lovely person. They all expressed concern for Jim today and promised to do all that they could do to make him comfortable.

    Jim wants to bring some of his fluffy tube socks to put under his neck and ankles. I actually asked the tech if that was okay, and the answer was: ďSure! Bring in the socks, and weíll give it a try!"

    Treatment Schedule:

    Mon 3/25 @ 11:00 a.m.

    Weds 3/27 @ 2:45 p.m.

    Fri 3/29 @ 9:15 a.m.

    Mon 4/1 @ 2:40 p.m.

    Wed 4/3 @ 2:40 p.m.

    I texted the schedule to John, and he responded immediately ďNo problem, weíll make it happen.Ē How wonderful is John?

    On every one of those days, John will either help me pull Jon up in bed or turn Jon. I repeat, How wonderful is John?

    I asked Jim whether he wanted to wait until April 1 to start his treatments, and he said, ďNo, I want to get it over with. I just wonít talk to her. If I have problems, weíll call Dr. F on his New York cell phone or Dr. K.Ē

    So, for now, Monday is the day.

    If, after the first treatment, Jim has any reservations, or is in tremendous, unrelenting pain, or doesnít think he can stand it, or is unable to get himself out the door every other day to do this, then, weíll stop.

    The good news, if there is any: No dye for contrast to do these treatments. Weíll still numb his port, but I was assured today that he wouldnít get dye. I think thatís what has been messing with his urine issues and dehydration.

    ABOUT THE DRUGS

    I also called our pharmacist regarding the quantity of codeine in the tablet and syrup, both of which he needs prior to a treatment. We have the sweetest pharmacist. They are so understanding at this pharmacy.

    She said that the syrup has 10 mg and the tablet has 30 mg of codeine. She said that is a low dose and shouldnít be concerning if only taken once prior to his treatment. She said that itís the weakest narcotic and takes excessive use over a long period to develop addiction, unlike Oxycontin or Fentynal.

    Jim doesnít have an addictive personality, and heís very cautious about his intake of every medication. The cough syrup helps him right away and often induces sleep for him after a hard coughing spell. It doesnít knock him out, and he usually wakes up in 2-3 hours. At least heís rested and not coughing.

    HOME CARE PLAN

    Iíll be taking vitals, charting, applying aspercreme, CBD cream, Witch Hazel, preventing him from doing anything strenuous, monitoring his drugs, hooking him up to a drainage bag if needed, feeding him, waiting on him.

    Tomorrow, Iím ordering on Instacart from Whole Foods for all of his favorites to keep him well fed. He has plenty of Orgain shakes on hand. We have a full supply of CBD and THC capsules, as of today.

    We have so many medical supplies, we could open a clinic. Iím not exaggerating.

    Iím hoping to cut Jimís hair tomorrow and have him out of bed long enough to change his sheets, so he has a clean bed for the treatment phase. I also have a couple of loads of his laundry to do before Monday, so he has fresh clothes every day. He has his ďat home clothesĒ and his ďoutside clothes.Ē I probably wonít have time or energy after treatments begin to do laundry as much as I need to, so Iíll try to get caught up this weekend.

    SIGH Ö

    How many breaks did you need to read this novella?

    JONATHAN

    With this upcoming treatment for Jim, I pray even more that Jon will remain stable as he is now. Jim will stress over Jon, if he has another respiratory set back, and over me doing everything for him and Jon.

    And, yes, it is exhausting for me, but most of all, Jon needs a giant break from all that heís been going through. His SATS continue to be good today, with no O2, but heís very tired, so tired that he couldnít relax enough to sleep soundly last night.

    John will be here Sunday to turn Jon. On Tuesday, Jonís nurse will be here to change his catheter. Thatís good, because she can also assess Jim.

    THANK YOU

    Thank you all so much for your love, support, prayers, friendship, positive, healing energy, hugs, and for walking beside us.

    We love you and pray for you and your loved ones and give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #913
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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)))))) ~

    You may need to take several breaks, while reading this. By the end, I guarantee you that you’ll have the full story!


    OPTIONS

    ANN ~

    Thank you for your hugs and prayers. The only other option, which was presented by Dr. P in January 2018, is Taxol. Dr. K also mentioned it, until Jim told him that he wanted to try Opdivo again.

    Dr. K isn’t a huge fan of radiation, but in Jim’s case, he sees this as the best option to eliminate the tumor. The size, structure, and position of the tumor makes it a good candidate for radiation. Lack of metastasis is another consideration. If cancer was spreading, they might suggest Taxol again.

    Since his bone marrow biopsy results do not indicate an underlying cause for his WBC cratering, the onus is placed on Opdivo, thereby eliminating Opdivo from the treatment list.

    TREATMENT

    funnylegs4 ~

    Yes, this is Jim’s decision to make, but as a family unit, it is one in which we all need to participate and discuss. We each have to think about the impact upon the other with the final decision.

    This morning, I picked up Jim’s Tylenol with Codeine (aka Tylenol 3) and Prednisone. These are the meds Jim has been instructed to take 1 hour prior to the treatments. Right before the treatment, he will take Promethazine with Codeine syrup to stifle coughing. He will also take a THC capsule later in the day/evening for pain.

    The treatment will take 45 minutes to 1 1/2 hours. That is a very long time to hold your arms above your head, even if you’re in good shape. (With the exception of Dwayne The Rock Johnson, of course!)

    Here’s what Jim has to do for these treatments, as he and the nurse and tech have described it to me:

    In a hospital gown, Jim lays on a hard, flat surface. Wedges under his: neck, knees, ankles. Back flat against the surface, where he has a bruise from the simulation. A mold which was made after the simulation is fitted over his torso, then bolted down so that he is immobile. This is where a cracked rib can occur. He raises his arms over his head. X-rays and CT scans are taken. The precise location of the tumor’s target is identified. Radiation is applied at a “high dose,” per Dr. F.

    Jim’s lack of motivation to exercise is principally caused by his overwhelming fatigue with the low WBC and RBC, the cancer, the RA, and all of the drugs he’s been given, as well as his age, I guess. He longs for the days when he was fit and mourns the loss of his muscle tone. As you know, I feel the same way about my deteriorating spine. Aging can be very difficult.

    DECISION MADE

    Donna ~

    The owl is gorgeous. What an expressive face. You definitely have a messenger there filled with spirit and wisdom. Birds are incredible parents and partners, with the exception of hummingbirds, where the female does everything after mating.

    We haven’t started exercising yet. Jim hasn’t had a treatment yet. He had the “simulation” or “staging” for the mold, which will be used in the treatments.

    Last night, Jim apologized about his announcement, and he knew that it knocked the rug out from under my feet. He was just feeling overwhelmed and fed up. He knows that I fully understand this.

    He said, “I want to get the radiation treatment. I’ve gone this far and endured all the rest of it, and with your help and care, I’m doing pretty well. I know you will take amazing care of me. I just don’t want to burden you. But I can see it will burden you no matter which way we go. I’m taking one for the team. I’ve got drugs and other stuff for the pain. If this works, I could live a lot longer. I’m not ready to leave you and Jon.”

    “Are you absolutely sure? Don’t do this just for us.”

    “I’m doing it for us: you, Jon, and me.”

    THE PHONE CALL

    At 9 a.m., we got a message from the Rad Onc department that they wanted to schedule Jim for his first treatment on Monday, March 25 at 11:00 a.m.

    I asked Jim, and he said, “Let’s get it over with, so I don’t have to lay around thinking about it.”

    I spent most of the day on the phone talking to the Rad Onc nurse, radiation coordinator, radiation tech, etc.

    Dr. F is out of the building, goodbye, gone boy. Covering for him were two Rad Onc’s from City of Hope. Oops! That was for this week, not next week. Next week, Dr. D, the dreaded Dr. D, is covering for Dr. F. Another doc from USC will be covering the week of April 1.

    This means that Dr. D will be reviewing all of Jim’s treatment and test results next week. Typically, the attending physician would talk to the patient, but I made it explicitly clear to everyone today, “Jim doesn’t want to talk to Dr. D.” They all said, “I know.”

    Thinking about this, however, who is really in charge of Jim’s treatments? The techs who carry out Dr. F’s plan. The doctor has nothing to do with administering the treatments.

    The tech, who treated Jim’s brain neoplasm, is on board to treat his lung tumor. The neoplasm is gone, so this tech has a good track record with us. They know and like Jim, as does everyone he meets, because he’s just a lovely person. They all expressed concern for Jim today and promised to do all that they could do to make him comfortable.

    Jim wants to bring some of his fluffy tube socks to put under his neck and ankles. I actually asked the tech if that was okay, and the answer was: “Sure! Bring in the socks, and we’ll give it a try!"

    Treatment Schedule:

    Mon 3/25 @ 11:00 a.m.

    Weds 3/27 @ 2:45 p.m.

    Fri 3/29 @ 9:15 a.m.

    Mon 4/1 @ 2:40 p.m.

    Wed 4/3 @ 2:40 p.m.

    I texted the schedule to John, and he responded immediately “No problem, we’ll make it happen.” How wonderful is John?

    On every one of those days, John will either help me pull Jon up in bed or turn Jon. I repeat, How wonderful is John?

    I asked Jim whether he wanted to wait until April 1 to start his treatments, and he said, “No, I want to get it over with. I just won’t talk to her. If I have problems, we’ll call Dr. F on his New York cell phone or Dr. K.”

    So, for now, Monday is the day.

    If, after the first treatment, Jim has any reservations, or is in tremendous, unrelenting pain, or doesn’t think he can stand it, or is unable to get himself out the door every other day to do this, then, we’ll stop.

    The good news, if there is any: No dye for contrast to do these treatments. We’ll still numb his port, but I was assured today that he wouldn’t get dye. I think that’s what has been messing with his urine issues and dehydration.

    ABOUT THE DRUGS

    I also called our pharmacist regarding the quantity of codeine in the tablet and syrup, both of which he needs prior to a treatment. We have the sweetest pharmacist. They are so understanding at this pharmacy.

    She said that the syrup has 10 mg and the tablet has 30 mg of codeine. She said that is a low dose and shouldn’t be concerning if only taken once prior to his treatment. She said that it’s the weakest narcotic and takes excessive use over a long period to develop addiction, unlike Oxycontin or Fentynal.

    Jim doesn’t have an addictive personality, and he’s very cautious about his intake of every medication. The cough syrup helps him right away and often induces sleep for him after a hard coughing spell. It doesn’t knock him out, and he usually wakes up in 2-3 hours. At least he’s rested and not coughing.

    HOME CARE PLAN

    I’ll be taking vitals, charting, applying aspercreme, CBD cream, Witch Hazel, preventing him from doing anything strenuous, monitoring his drugs, hooking him up to a drainage bag if needed, feeding him, waiting on him.

    Tomorrow, I’m ordering on Instacart from Whole Foods for all of his favorites to keep him well fed. He has plenty of Orgain shakes on hand. We have a full supply of CBD and THC capsules, as of today.

    We have so many medical supplies, we could open a clinic. I’m not exaggerating.

    I’m hoping to cut Jim’s hair tomorrow and have him out of bed long enough to change his sheets, so he has a clean bed for the treatment phase. I also have a couple of loads of his laundry to do before Monday, so he has fresh clothes every day. He has his “at home clothes” and his “outside clothes.” I probably won’t have time or energy after treatments begin to do laundry as much as I need to, so I’ll try to get caught up this weekend.

    SIGH …

    How many breaks did you need to read this novella?

    JONATHAN

    With this upcoming treatment for Jim, I pray even more that Jon will remain stable as he is now. Jim will stress over Jon, if he has another respiratory set back, and over me doing everything for him and Jon.

    And, yes, it is exhausting for me, but most of all, Jon needs a giant break from all that he’s been going through. His SATS continue to be good today, with no O2, but he’s very tired, so tired that he couldn’t relax enough to sleep soundly last night.

    John will be here Sunday to turn Jon. On Tuesday, Jon’s nurse will be here to change his catheter. That’s good, because she can also assess Jim.

    THANK YOU

    Thank you all so much for your love, support, prayers, friendship, positive, healing energy, hugs, and for walking beside us.

    We love you and pray for you and your loved ones and give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    Rose,

    You're very welcome! Of course you all make decisions together as a family! I did NOT mean to imply in any way that he would be deciding totally alone or that the decisions would not effect you or Jon. The fact that you decide things together is why I very strongly believe Jim has lived this long with his cancer. You are all such a huge blessing to each other and I wish every person with cancer and/or a disability had a support system like your family. So sorry I also did not realize the treatment could take more than an hour! Ouch! The being bolted down does sound a bit terrifying to say the least! Its also scary that the treatments are so close together but as Jim put it just get it over with fast. I wonder if since he is flat on his back if he could lean his arms against the flat surface to take some of the pressure off?? I hope the mold is made specifically for Jim’s body like how my AFOs were created for better alignment and for pain reduction???

    I feel so sad that Jim’s feeling of being a burden was factoring into his frustration. That utterly breaks my heart. He is a blessing, not a burden! I completely understand about the fatigue! As the designer Iris Apfel (age 96) said in her book “Accidental Icon” “Getting Old ain’t for sissys” . That book is totally worth the read. I even know a lot of younger people with disabilities who also have fatigue so Jim is not alone. Sorry about the issue with Dr D. Yuck!

    I read your whole post and your treatment plan made me take a HUGE sigh of relief. It seems very logical and like it would have a high chance of success. I’m so glad Jim took a step back with you and thought things over. I will pray for Jim and you and Jon on every one of his treatment days for the best possible outcome(s)!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #914
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    Oh, thank you for the update Rose! I am so glad to know what's happening so I can visualize everything and pray for specific outcomes. I got mixed up about the trial run - I was thinking that Jim had already had one treatment. I understand now that Monday will be his first. Maybe the socks as pillows will really work. I hope so! And it's so good that the techs know Jim and you've had a chance to review everything with them. Their reaction about trying to make Jim as comfortable as possible sounds truly hopeful. And the drugs sound as good as they can be. Prayers going up that Jim can handle this and that it will be the end of the tumor.
    Yes, our visiting birds are spiritual - our first nations believe this too. I looked up the spiritual meaning of owls and this is what I found: The owl was highly regarded by many cultures that used this bird as a clan symbol. Owls were associated by the Pueblo with dusk, the night and the moon. Similarly, the Mystic Owl Society hung owl skin in their lodge to symbolize the night darkness [26].

    I'm glad they mean clan - so we can think of my owl as being a symbol of our connected families here at CN2. That makes me happy. Lots of love and sure will be saying my prayers on Monday. xoxo 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: http://www.donnathomson.com


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  9. #915
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    Rose, thank you for letting us know all the details. It makes everything easier to know how to pray and how to hope for Jim, you and Jon for a very positive outcome. So glad he is giving it a try.

    Wouldn't it be wonderful if all sick people had a John in their lives. He is a marvel.
    Last edited by Virginia; 03-23-2019 at 01:49 PM.
    Virginia

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  11. #916
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Jim's arms have to be above his head, so he can lean them against a flat surface. The techs arrange him, put the mold on him, bolt him down, and that's it. The mold was made specifically for him, which was part of the simulation. He had a mold for his brain radiation. He brought it home. It looks like a horror movie mask!

    Jim is worried about causing me too much work. But he also knows that I adore him and don't want to lose him. He is not a burden, nor is Jon. EVER. If I have any kind of burden, it's age. I wish that I was younger with more energy. Iris Apfel is absolutely right!

    Thank you so much, as always, for your prayers and know we pray for you too.

    Donna ~

    I know it's confusing. I'm confused too, and I have notes all over the place to keep track of everything, plus a calendar with dates of his treatments and doctor appointments and tests. Jim is more confused than any of us, so I just tell him what he needs to know when he needs to know it.

    Your owl can be our CN tribe totem! In our family (Jon and Michael are 1/8 Chocktaw), we have two totems: the bear and the hummingbird.

    Thank you so much for your prayers. How is Nick doing? Sending prayers for all of you.

    Virginia ~

    John once said to us, while we turning Jon and thanking him, "If every person helped just one other person, wouldn't it be a wonderful world?" We've known John for 23 years, when his parents bought the house two doors down from ours. We are family. John is very much like a son to us. His Dad passed in 2011, and his mom is in a residential care home, with multiple health issues and dementia. So, he's responding to us as family. He truly understands. He is a marvel.

    Thank you so much for your prayers. I'm praying for you too that your dizzy spells subside.

    Jon is back on O2 this evening. Bummer. I hope this is just a short round, as he was doing so well. But he is having trouble sleeping, and his bowels are not moving after 2 doses of MOM. John will be here to turn Jon tomorrow, and I hope Jon is up to it.

    Never a dull moment ...

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  13. #917
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    LOL Rose, I didn't need any breaks ! After that first sentence I got up topped off my coffee and heated up my lavender neck wrap.
    But it does tire me just reading your post. So much to do but I agree and can see it's never a burden when something is done out of love and concern it's amazing how long your body can go without rest. Kathleen doesn't take as much intense care but I know when she does or even when my other kids were sick I would get a different kind of energy even if I was sick as well. Doing exactly what you talk about getting all their comfort foods making sure their beds were fresh and clean favorite movies. It's funny it would always make me feel more relaxed and comforted to be able to do these things. I'm so glad for your family that Jim has decided to try the treatment. I hope he can tolerate it all and have minimal pain after it. Can he do some breathing exercises while in the treatment or is that too much movement. Focusing on deep slow breaths and counting through them can be very relaxing.
    I am so thankful that you have someone like JOn in your life to help sounds like an angel. When I'm sending prayers for you family please know that it includes him because he is such an important part of your family. Please keep us posted and I will be sending many healing prayers today.
    (((((HUGS)))) to you all!
    Mary Grace

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  15. #918
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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 ~

    Jim's arms have to be above his head, so he can lean them against a flat surface. The techs arrange him, put the mold on him, bolt him down, and that's it. The mold was made specifically for him, which was part of the simulation. He had a mold for his brain radiation. He brought it home. It looks like a horror movie mask!

    Jim is worried about causing me too much work. But he also knows that I adore him and don't want to lose him. He is not a burden, nor is Jon. EVER. If I have any kind of burden, it's age. I wish that I was younger with more energy. Iris Apfel is absolutely right!

    Thank you so much, as always, for your prayers and know we pray for you too.

    Donna ~

    I know it's confusing. I'm confused too, and I have notes all over the place to keep track of everything, plus a calendar with dates of his treatments and doctor appointments and tests. Jim is more confused than any of us, so I just tell him what he needs to know when he needs to know it.

    Your owl can be our CN tribe totem! In our family (Jon and Michael are 1/8 Chocktaw), we have two totems: the bear and the hummingbird.

    Thank you so much for your prayers. How is Nick doing? Sending prayers for all of you.

    Virginia ~

    John once said to us, while we turning Jon and thanking him, "If every person helped just one other person, wouldn't it be a wonderful world?" We've known John for 23 years, when his parents bought the house two doors down from ours. We are family. John is very much like a son to us. His Dad passed in 2011, and his mom is in a residential care home, with multiple health issues and dementia. So, he's responding to us as family. He truly understands. He is a marvel.

    Thank you so much for your prayers. I'm praying for you too that your dizzy spells subside.

    Jon is back on O2 this evening. Bummer. I hope this is just a short round, as he was doing so well. But he is having trouble sleeping, and his bowels are not moving after 2 doses of MOM. John will be here to turn Jon tomorrow, and I hope Jon is up to it.

    Never a dull moment ...

    Love & Light,



    Rose
    So the mold at the stimulation is the exact same mold that is used during the real treatment? I see the first treatment date on your list is today March 25th 2019. I pray like crazy it was a good treatment day!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  16. #919
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
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    1

    Default Treatment Cancelled: Jim Is Ill

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

    Jim started coughing excessively this weekend, including coughing up blood. This morning his cough was relentless and fierce. He also has been sweating, then feeling cold. His temp was 99.8. Other vitals were fine, but he felt like heíd been put through a meat grinder.

    So, I called Rad Onc and cancelled his first treatment. Then, I called Dr. Kís office to let him know what was happening with Jim. Dr. K called Jim, and, suspecting pneumonia, he prescribed a ďstrongĒ antibiotic (per Jimís words, but Jim couldnít remember the name of the antibiotic). If I could have gathered some brain cells from my exhausted brain, I would have called back to ask the name of the antibiotic, but I didnít.

    ANTIBIOTICS CAN BE PROBLEMATIC

    When I returned from the pharmacy and opened the bag, I discovered Dr. K had prescribed Levaquin. This drug has many boxed warnings regarding severe to deadly side effects. Michael and Jon had adverse reactions, including seizures, to their first Levaquin dose, so I know the damage it can do. The warnings are for people over 60, and/or who take steroids, have RA, are prone to peripheral neuropathy. Well, that would be Jim.

    I called Dr. Kís assistant and told her that the risks for Jim were too great with Levaquin, and I asked her to ask Dr. K for another antibiotic. She argued with me slightly, ďDr. K knows Jim and that he has all of these things, but he must think that the benefit outweighs the risk.Ē

    ďPerhaps he does. But I know my husband, and Iím his caregiver. He is not willing to take the risk, regardless of the potential benefit. Jim has enough problems, he doesnít need to worry about having more. Please ask Dr. K for an alternative.Ē

    Most people arenít well enough informed on potential side effects, many donít even read the leaflet accompanying medications and trust that ďthe doctor knows best.Ē Iím not one of those people. I canít imagine the number of drugs Iíve researched in the past 50 years to protect my children, as well as family and friends from pharmaceutical damage.

    With Jonathan after several hospitalizations, the Infectious Disease doc quizzed me on every potential antibiotic prior to ordering it. Heíd then look up each drug, return to Jonís ICU room and say, ďYou were right. Iíll keep looking.Ē

    When questioned about why I didnít give Jon Synthroid by ICU docs, I provided a 15 page document I had written to justify refusal, complete with references to scholarly articles on medical websites.

    When I explained the Synthroid decision and my refusal give Jon Fosamax to our favorite ICU pulmo and intensivist, he rolled his eyes and said, ďOf course, youíre right, and your research is incredible. The last drug Jon should ever have is Fosamax!Ē

    I laughed, ďActually the list of Ďthe last drug Jon should ever haveí is quite lengthy.Ē

    Of course, Dr. K and the oncology department have no awareness of my credibility when it comes to drugs. I shouldnít be offended, when the medical assistant tells me that the doctor knows better than I do. That is the case about a gazillion things, but drugs isnít one of them.

    Dr. K also prescribed an NSAID for Jimís pain medication, which I summarily cancelled, because he canít take NSAIDs. He coughs up blood. Thatís a problem with NSAIDs, which is exacerbated, if youíre already coughing up blood. His WBC and RBC are low. I know this. Why doesnít Dr. K?

    A pharmacist is the drug expert. Thatís why I always team up with our pharmacist and communicate about side effects. She knows I know what Iím talking about.

    So, when I returned this evening to pick up Jimís Z-pack, the pharmacist said that the doctor had called to cancel the Levaquin for potential side effects. (Too late, I already paid $47 for it in the morning.) I told her that he cancelled it, because I told him Jim was at risk. She smiled,ďHe should be okay on the Z-Pack. Heís had it before.Ē

    Meanwhile, Jimís coughing subsided throughout the day. Go figure.

    NEXT ON JIMíS AGENDA

    On Friday, 3/29 at 11:00, Jim will have a blood draw and a chest x-ray at the medical offices, and heíll see Dr. K at noon. Jim will be finished with his Z-pack by then.

    Weíre going to reschedule the radiation treatments for next week. We already have Monday and Wednesday scheduled. Iíll call tomorrow to schedule for Friday, and the following Monday and Wednesday.

    JONATHANíS DAY

    I also had to cancel John this morning for Jimís transportation. He visited after work to turn Jon.

    I had about 40 minutes to shave and bathe Jon, gather everything for the turn, turn off his feeding and flush his tube, empty his drainage bag, bring in supplies, before John arrived.

    We turned Jon, and his wounds are the same. Thankfully, he isnít leaking over his catheter. However, his colostomy is leaking. Three days in a row now, Iíve had quite a mess to clean up with explosive BMs. Well, I prayed for his bowels to move, but I thought I was more specific than this result!

    Jon has been on and off of O2. Iím still very conflicted about the antibiotic choices for him. Weíve nearly lost him too many times to an adverse reaction and the obliteration of the values of his seizure meds.

    LONG DAYíS END

    My feet hit the floor this morning after 3 hours of sleep, and I didnít stop until 5:30. I made lunch for Jim and me, and then I went out for the Z pack during rush hour. Itís been so long since Iíve driven in traffic, it was a bit of jolt for me to be out at that time. Thankfully, itís only 3 miles.

    I said to Jim this evening, ďThere is a reason why this happened. Dr. D is in charge this week. Next week, it will be a doctor from USC. Good or bad, itís not going to be Dr. D. Maybe weíre not as ready as we thought we were. You may have pneumonia, and having radiation, when you have pneumonia is probably a bad idea. And, this gives me a week to wash the 4 pairs of pajamas I bought you yesterday from Amazon!Ē

    I was opening the PJ packages, showing him what he got, when I said this. He doesnít have button down shirt PJs. He wears T shirts. When his arms have to be above his head for an hour, he isnít going to feel like putting on/taking off T shirts.

    He loves his new PJs. So that was a nice way to end this long, complicated, and stressful day.

    Thank you all so much for your love, prayers, support, and enduring friendship.

    We send all of our love to you and prayers for you and your loved ones every day.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  18. #920
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,711
    Blog Entries
    29

    Default

    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)))))) ~

    Jim started coughing excessively this weekend, including coughing up blood. This morning his cough was relentless and fierce. He also has been sweating, then feeling cold. His temp was 99.8. Other vitals were fine, but he felt like he’d been put through a meat grinder.

    So, I called Rad Onc and cancelled his first treatment. Then, I called Dr. K’s office to let him know what was happening with Jim. Dr. K called Jim, and, suspecting pneumonia, he prescribed a “strong” antibiotic (per Jim’s words, but Jim couldn’t remember the name of the antibiotic). If I could have gathered some brain cells from my exhausted brain, I would have called back to ask the name of the antibiotic, but I didn’t.

    ANTIBIOTICS CAN BE PROBLEMATIC

    When I returned from the pharmacy and opened the bag, I discovered Dr. K had prescribed Levaquin. This drug has many boxed warnings regarding severe to deadly side effects. Michael and Jon had adverse reactions, including seizures, to their first Levaquin dose, so I know the damage it can do. The warnings are for people over 60, and/or who take steroids, have RA, are prone to peripheral neuropathy. Well, that would be Jim.

    I called Dr. K’s assistant and told her that the risks for Jim were too great with Levaquin, and I asked her to ask Dr. K for another antibiotic. She argued with me slightly, “Dr. K knows Jim and that he has all of these things, but he must think that the benefit outweighs the risk.”

    “Perhaps he does. But I know my husband, and I’m his caregiver. He is not willing to take the risk, regardless of the potential benefit. Jim has enough problems, he doesn’t need to worry about having more. Please ask Dr. K for an alternative.”

    Most people aren’t well enough informed on potential side effects, many don’t even read the leaflet accompanying medications and trust that “the doctor knows best.” I’m not one of those people. I can’t imagine the number of drugs I’ve researched in the past 50 years to protect my children, as well as family and friends from pharmaceutical damage.

    With Jonathan after several hospitalizations, the Infectious Disease doc quizzed me on every potential antibiotic prior to ordering it. He’d then look up each drug, return to Jon’s ICU room and say, “You were right. I’ll keep looking.”

    When questioned about why I didn’t give Jon Synthroid by ICU docs, I provided a 15 page document I had written to justify refusal, complete with references to scholarly articles on medical websites.

    When I explained the Synthroid decision and my refusal give Jon Fosamax to our favorite ICU pulmo and intensivist, he rolled his eyes and said, “Of course, you’re right, and your research is incredible. The last drug Jon should ever have is Fosamax!”

    I laughed, “Actually the list of ‘the last drug Jon should ever have’ is quite lengthy.”

    Of course, Dr. K and the oncology department have no awareness of my credibility when it comes to drugs. I shouldn’t be offended, when the medical assistant tells me that the doctor knows better than I do. That is the case about a gazillion things, but drugs isn’t one of them.

    Dr. K also prescribed an NSAID for Jim’s pain medication, which I summarily cancelled, because he can’t take NSAIDs. He coughs up blood. That’s a problem with NSAIDs, which is exacerbated, if you’re already coughing up blood. His WBC and RBC are low. I know this. Why doesn’t Dr. K?

    A pharmacist is the drug expert. That’s why I always team up with our pharmacist and communicate about side effects. She knows I know what I’m talking about.

    So, when I returned this evening to pick up Jim’s Z-pack, the pharmacist said that the doctor had called to cancel the Levaquin for potential side effects. (Too late, I already paid $47 for it in the morning.) I told her that he cancelled it, because I told him Jim was at risk. She smiled,“He should be okay on the Z-Pack. He’s had it before.”

    Meanwhile, Jim’s coughing subsided throughout the day. Go figure.

    NEXT ON JIM’S AGENDA

    On Friday, 3/29 at 11:00, Jim will have a blood draw and a chest x-ray at the medical offices, and he’ll see Dr. K at noon. Jim will be finished with his Z-pack by then.

    We’re going to reschedule the radiation treatments for next week. We already have Monday and Wednesday scheduled. I’ll call tomorrow to schedule for Friday, and the following Monday and Wednesday.

    JONATHAN’S DAY

    I also had to cancel John this morning for Jim’s transportation. He visited after work to turn Jon.

    I had about 40 minutes to shave and bathe Jon, gather everything for the turn, turn off his feeding and flush his tube, empty his drainage bag, bring in supplies, before John arrived.

    We turned Jon, and his wounds are the same. Thankfully, he isn’t leaking over his catheter. However, his colostomy is leaking. Three days in a row now, I’ve had quite a mess to clean up with explosive BMs. Well, I prayed for his bowels to move, but I thought I was more specific than this result!

    Jon has been on and off of O2. I’m still very conflicted about the antibiotic choices for him. We’ve nearly lost him too many times to an adverse reaction and the obliteration of the values of his seizure meds.

    LONG DAY’S END

    My feet hit the floor this morning after 3 hours of sleep, and I didn’t stop until 5:30. I made lunch for Jim and me, and then I went out for the Z pack during rush hour. It’s been so long since I’ve driven in traffic, it was a bit of jolt for me to be out at that time. Thankfully, it’s only 3 miles.

    I said to Jim this evening, “There is a reason why this happened. Dr. D is in charge this week. Next week, it will be a doctor from USC. Good or bad, it’s not going to be Dr. D. Maybe we’re not as ready as we thought we were. You may have pneumonia, and having radiation, when you have pneumonia is probably a bad idea. And, this gives me a week to wash the 4 pairs of pajamas I bought you yesterday from Amazon!”

    I was opening the PJ packages, showing him what he got, when I said this. He doesn’t have button down shirt PJs. He wears T shirts. When his arms have to be above his head for an hour, he isn’t going to feel like putting on/taking off T shirts.

    He loves his new PJs. So that was a nice way to end this long, complicated, and stressful day.

    Thank you all so much for your love, prayers, support, and enduring friendship.

    We send all of our love to you and prayers for you and your loved ones every day.

    Love & Light,



    Rose
    Oh Rose! I'm so sorry Jim is ill but maybe cancelling the treatments until next week is a bit of Godly intervention and delaying it will make things better in the long run. Perhaps this is exactly how things are supposed to be and we don't know it yet. My college professors would love your 15 page paper on medications! Nice work! I will pray for the new treatments to go well and for Jon's colostomy to stop leaking!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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