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Thread: Jim's Update

  1. #891
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you Marcie, ANN, funnylegs4, Mary, and Donna! It is a pleasure to share good news.

    It gets even better, as the results were posted to Jim's portal.

    Jim's tumor has shrunk by 2 mm! He has not had Opdivo since early January.

    Dr. K emailed to tell us that Jim's low WBC is likely from Opdivo, as no other causes were determined by the biopsy. I don't know what this means in terms of Jim having Opdivo again.

    When Jon's nurse arrived today, Jim shared with her that Dr. F said, "I might break a rib with this treatment. I'll try not to do that. But it can happen."

    Jim swears that he told me this yesterday. I'm sure that he didn't, because that is something I would remember! About 20 years ago, I fell and broke a rib. It was quite painful and took a long time to heal. So, we're now praying for no broken ribs!

    Jim and I are still processing the good news. Last night, we both agreed that while we were hopeful, we were prepared for the worst scenario. We told Jon's nurse that we're absorbing this wonderful outcome and the promise it holds.

    Thank you all again and again for traveling with us on this journey. You are a blessing to us, and we love you.

    Love & Light,



    Rose
    You're welcome Rose! Wow, so the tumor got smaller! AMAZING! As I have said in this thread before, I always thought Opdivo was supposed to be raising Jim's immunity not be causing low immunity...the good news here is that Jim does not have a 2nd health problem and the shrinking tumor size may make the radiation more effective. My family had broken ribs before, it is indeed painful but heals by itself in most cases.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #892
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    This is the best of all news. I am so happy for all of you - Jim, Rose and Jon. A shrinking tumor is the kind you want to have, if you have to have one at all.

    Just let it sink in and believe it.
    Virginia

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  5. #893
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    Exclamation PET Scans Do Have Side Effects

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

    This morning Jim told me that he was peeing "glittery, sparkly, glowing razor sharp crystals."

    He said that he was given some "sugary type stuff" through his port prior to the PET scan. He was told by the tech to drink a lot of water. Evidently, he needed to drink more water, which he did, and the urgency to urinate as well as the neon razor blades have ceased.

    So much for, "The PET scan has no side effects" on the information sheet! I think this qualifies as a side effect! What would any of us think if our urine suddenly lit up like a 70s disco? Not to mention the slicing and dicing during the urine's exit.

    More water means less appetite and less sleep, because of frequent trips to the bathroom. We had a large meal last night with steamed potatoes, carrots, parsnip, peas, red onion and celery (I love this new Cuisinart steamer!) and Gardein "turky" cutlets. We have leftovers for tonight, whenever Jim wakes up.

    I also made Simple Mills chocolate chip cookies. Very good gluten free alternative. Made with almond flour. We love all of their products.

    With my Instacart order the last time, I got Beecher's "World's Best Macaroni and Cheese." I haven't had this for at least 10 years. I was eating it too often and gained weight, as well as it didn't do my RA or arteries any favors. I just had a hankering for it, so I got it.

    I expected John to visit this morning to turn Jon, so I bathed Jon and got everything out and ready. Then John told me that he was spending the day working in the family's business. So, we'll turn Jon tomorrow after John finishes his work day.

    I didn't have breakfast, and I was hungry, so I made my comfort food. With a bemused expression, Jim watched me devour my single serving of this incredible treat.

    I told him, "I could eat this entire container right now. But I won't, because I know it will set off my RA, and I'll gain weight, and I won't be able to have a decent bowel movement for a week. For right now, though, this was excellent and served its purpose."

    On Tuesday, Jim will see Dr. F and be fitted with a mold to go over his torso. Like his brain radiation, where he had what looks like a hockey mask, he will be bolted down so that he doesn't move, when he has treatments. This is why Dr. F warned Jim that he could break a rib. I worry with Jim's coughing and sneezing that his ribs will be vulnerable. He needs to talk to Dr. F about this, and it's on my list of questions for Jim to take to Dr. F.

    On Thursday, Jim will see Dr. K and go over all of his test results and the path forward. My guess is that radiation will start the week of the 18th.

    We know that we are blessed. So many things could be far different, and we are extremely grateful for Jim's stable condition right now. We pray it continues to be so.

    Thank you all for your love, prayers, support, healing, positive energy, and friendship.

    We love you!

    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 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. #894
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    I wonder if you were told the PET scan had no side effects because the substance was not something directly caused by the scan but, to make the scan show up better, and not the scan itself and they were just too lazy to mention it. So sorry about that! :(
    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. #895
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    I am so glad you had your treat, Rose!!! Prayers for Jim and Jon as always. Every. Single. Day. 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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  11. #896
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Jim's "Most Horrible Thing"

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

    Jim had a very difficult day today with his "simulation" to prepare for radiation treatments.

    Laying on a hard flat surface, arms above his head, during a scan and for markings (he calls them "tats") down the middle of his chest on on his sides. That took about a half hour. Jim said that he was in a lot of pain and discomfort. He was told that he couldn't move or change his breathing pattern, because that could cause a slight error in the target. I prepared a syringe with 5 cc of Promethazine Codeine, which he took before the procedure began.

    He declared, "This was the most horrible thing I've ever been through in my life." That's saying a lot, considering all that he's been through the last 2 years.

    When Jim told the nurse that he'd taken 20 mg of Prednisone this morning, the nurse asked him what else he has to relieve pain other than steroids and Tylenol. Jim replied, "Cannabis." She told him to take it before his treatments.

    Five treatments, every other day, will be scheduled. Jim was told that they treat 4 patients a day. So the wait list may be a bit long.

    Jim was told that 1 out of 100,000 patients die from this treatment. He didn't ask why they died or how they died. I would have, of course.

    And then the disappointing news: Dr. F is leaving at the end of March. He told Jim that he would be in contact with him throughout his treatments, and he gave Jim his card and told him to call him anytime. We don't know where he is going or why. Another radiation oncologist will join the staff to replace him.

    We fought so hard to get Dr. F, and now I know why they tried to book Jim with Dr. D. Obviously, with Dr. F leaving, they wanted to place as many patients with her as possible.

    Jim is utterly exhausted and is sleeping now.

    On Thursday, Jim will see Dr. K. I'm hoping that he will get the results of his PET scan and blood draw from last Thursday, as they haven't been posted to his health portal. I also hope that Jim will discuss his concerns about the radiation and Dr. F leaving. He needs to release some of his anxiety on Dr. K and be reassured.

    A very long and stressful day for all of us.

    But, we persevere and keep moving forward.

    Thank you all so much for walking beside us on our journey. We love you and pray for you and your loved ones.

    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 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. #897
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    Default Last Chance for Gas

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

    Jim's visit with Dr. K yesterday was reassuring, in that Dr. K was impressed with the reduction in the size of Jim's tumor. He also remarked again that Jim's condition is "amazing," given his low WBC and the tumor that continues to shrink but doesn't vanish.

    When Jim mentioned the concern about coughing/sneezing during treatments or following them, Dr. K didn't have advice.

    When Jim mentioned the bruise on his back after the simulation, Dr. K didn't look at it. He said that it would likely dissipate. I've seen it, and I'm thinking that he will have that every time he goes in for his treatment. Healing that bruise with repeated pressure on a hard surface will be a challenge. I'll be applying paper towels soaked in Witch Hazel to the bruise every day.

    Jim is in pain from his neck to his shoulders, upper arms, and shoulder blades. This is from raising his arms above his head for over 40 minutes for the simulation. He will have to do this for all 5 treatments.

    For this, I offered a possible help: exercise. We'll start this when some of this pain wears off. Jim will lay flat in his bed, raise his arms above his head, hold for 10 seconds, bring them down, hold for 10 seconds, and repeat. We'll start slow and work up to it as he can tolerate longer periods of having his arms above his head.

    This is The Super Bowl of Cancer, and we have to get in shape for the big game. I've now become a trainer! Add that to my resume and get me a whistle ...

    Jim is fretting and nervous. He asked me to email Dr. K to request some pain medication for the treatments. Jim said, "I only want 5 pills, one for each treatment."

    I scoffed, "Honey, the potential for pain will be longer than the day of treatment. I don't want to keep emailing Dr. K for refills and going to the pharmacy to pick them up. We'll get a reasonable amount."

    "Something stronger than Tylenol, but not too strong," Jim said.

    "Hmm ... that sounds like THC," I answered.

    Yes, I'll get him a prescription for something, but as yet, I don't know what pain medication would be best for him. He hasn't responded well to the pain meds he's been given in the past.

    To remedy today's pain, I convinced him to allow me to massage Aspercreme into his arms, shoulders, neck, and back. It worked. We also have several wonderful CBD oil creams. They can take awhile to relieve the pain, where Aspercreme works faster.

    In the afternoon, Jim seemed to feel well enough to bring in the trash bins, toss in the trash from today, and sweep the garage. "What are you doing?!" I shouted at him from the garage door.

    Why did Jim do this? Because last night, while he and Jon were sleeping, I put out our very heavy overloaded trash bins to the driveway, and then I carried out over 30 boxes to the curb for separate pick up. We order everything on line, so we have a ton of boxes in our garage. I often forget to call the trash company for a special pick up, so they quickly accumulate.

    He had to take codeine last night, because he was coughing so much. Of course, that induces sleep, which he needs. He has asked me to write in Jon's chart the time I go to bed, so when he gets up, he knows how long I was up. This morning, I scribbled in a haze, "I went to bed at 6:00."

    Jon's SATS were finally stable in the mid-90s, and he had stopped coughing out goober. I knew Jim would be up fairly soon, so I just collapsed in bed for 2 hours.

    Jim feels guilty, because I'm overworking and not getting enough sleep. I can try every way to tell him not to feel this way, but it doesn't stop him.

    At Jim's request, I did some research on his radiation procedure to help us understand better how it works. I found Stereotactic Body Radiation Therapy, which describes essentially what we know about his treatments.

    One thing that Dr. K did say to Jim, which disturbs us, was that there are problems in the radiation oncology department. Jim said the machine seems medieval. Our hospital has state of the art robotic surgery, cardiac care, cancer care. It makes no sense that our rad onc dept is outdated. We speculate that this is why Dr. F left.

    That's not reassuring by any stretch. And it's not reassuring that Dr. F promised to be available to Jim by phone during his treatments.

    This is the last resort. This is the end of the treatment line. If radiation is unsuccessful, apparently, there is nothing else for Jim. Dr. K said that there will be no more Opdivo infusions.

    It feels like we're driving on a desert highway, and the road sign says, "Last Chance for Gas for 3,000 miles."

    Even if we fill up, will that be enough to take us that far?

    Thank you all for your love, support and prayers, and for walking beside us on this journey. You and your loved ones are always in our prayers.

    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 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. #898
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    Rose, your idea of exercise to help Jim cope with the position for radiation is wonderful. I think it will work - at least it is bound to REALLY help. The aging out of the equipment in the radiation dept is worrisome, but it may be that the older equipment malfunctions less often than the newer stuff. I wonder what the technicians say about it. I really hope and pray that the treatments won't be too difficult for Jim to endure and that they work. Also that the physicians support you both through this - the staffing sounds chaotic and that's the last thing you need at this stage (or any stage) of cancer treatment.

    Jim is spending the day with Nick today (I was in all day yesterday) and tomorrow we bring our lad home!!! We are so relieved that he's doing better. He's still quite dehydrated but we can fix that at home. I don't know why dieticians at the hospital don't give him enough water. He dehydrates much more quickly that the average person. The condition with his collapsed lung has alleviated and the fever is gone. One step at a time and we're getting there. Sending love from me and my family to you and yours, my dear Rose. 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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  17. #899
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    ((((((Donna)))))) ~

    What great news that Nick is coming home tomorrow! Less time in the hospital is a good thing with so many hospital-borne infections around these days.

    Jon gets dehydrated, when we reduce his feeding rate, which I suspect would be the case for Nick as well. We always supplement with free water on a lower feed rate. How is Nick's urine output?

    I can't understand the outdated equipment in the rad onc department. Our hospital has state-of-the-art robotic surgical equipment, laser technology, lots of newer toys. Cancer is rampant, of course, especially among Seniors. We have a newly renovated Cancer Center with a cancer-dedicated infusion unit. In the new tower, there is a plush Cancer Unit, which is where Jim stayed during his two hospitalizations. We have 6 oncologists, and currently only one radiation oncologist, now that Dr. F is leaving. The search is on for his replacement, but that should have happened before he walked out the door.

    Dr. F transferred here from New York. He gave Jim his cell phone number, which is a NY area code. So now, if we call him for guidance, advice, assistance, it's a pretty expensive toll call!

    Jon had a very long day and night, with copious amounts of mucous. He coughed out a lot on his own, but he was so exhausted, we had to suction too often. He went back on 2.5 liters of O2.

    Even when I was in with Jon, Jim would jump up off his futon nest to come in to assist me. He and Jon slept for about 5 hours until midnight. Jim wanted me to go to bed. I refused. At 3:30, he ordered me off of Jon's chairbed and off to our bed. I said "no," and he insisted. At 4:00, I heard him suctioning Jon.

    Jim is paying for it today with pain. I offered to slather him with Aspercreme. He said he wanted to soak in the tub. I reminded him that our tubs are old and decrepit and unsuitable for soaking. They're shallow, but difficult to get in and out of. Nothing relaxing about sitting on a hard surface. He needs his neck and shoulders to soak, but he'd have to scoot all the way down in the tub to get them in the water.

    I suggested a hot shower followed by Aspercreme. He agreed, but that was the end of it.

    Then, he told me he hadn't taken his steroid yet. I handed him 10 mg to see how well it worked. He can always take more if needed. But 10 mg worked well.

    Oh, and he told me that he was going to take 60 mg of Prednisone on his treatment days. I just looked at him, shaking my head. "No, you're not." Later after I reminded him of how sick he was taking 40 mg/day over a weekend, and that when he takes 60, he has to do a daily wean, he agreed with me.

    Yesterday, he protested the arm stretching exercise. He said he was told not to exercise. I explained that meant strenuous exercise. This is passive range of motion. He said it wasn't his muscles that hurt but his bones. I reminded him that both of them are probably hurting from disuse. So a little, gentle movement daily might strengthen them enough to make it more tolerable to do the treatments with less after pain. Also, our joints need exercise as well as our muscles and organs.

    I lectured the standard, "Please stop overdoing" theme. He responded, as usual, that he couldn't lay around and watch me do everything. I replied, as usual, "Yeah, well now I'm watching you laying here in agony. That's not helping me today, because now I'm MORE worried about you."

    Meanwhile, the O2 trache mask is resting on Jon's chest, away from his open trache, so just a trace of O2 is getting to him. His SATS are holding in the low 90s. Congestion has lessened. W pray we're on our way to weaning off of O2.

    Donna, we send you all of our love and prayers and happiness that Nick is homeward bound. He is a brave, resilient young man. Continuing prayers for Nick's full recovery. We Love You!

    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 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. #900
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Donna)))))) ~

    What great news that Nick is coming home tomorrow! Less time in the hospital is a good thing with so many hospital-borne infections around these days.

    Jon gets dehydrated, when we reduce his feeding rate, which I suspect would be the case for Nick as well. We always supplement with free water on a lower feed rate. How is Nick's urine output?

    I can't understand the outdated equipment in the rad onc department. Our hospital has state-of-the-art robotic surgical equipment, laser technology, lots of newer toys. Cancer is rampant, of course, especially among Seniors. We have a newly renovated Cancer Center with a cancer-dedicated infusion unit. In the new tower, there is a plush Cancer Unit, which is where Jim stayed during his two hospitalizations. We have 6 oncologists, and currently only one radiation oncologist, now that Dr. F is leaving. The search is on for his replacement, but that should have happened before he walked out the door.

    Dr. F transferred here from New York. He gave Jim his cell phone number, which is a NY area code. So now, if we call him for guidance, advice, assistance, it's a pretty expensive toll call!

    Jon had a very long day and night, with copious amounts of mucous. He coughed out a lot on his own, but he was so exhausted, we had to suction too often. He went back on 2.5 liters of O2.

    Even when I was in with Jon, Jim would jump up off his futon nest to come in to assist me. He and Jon slept for about 5 hours until midnight. Jim wanted me to go to bed. I refused. At 3:30, he ordered me off of Jon's chairbed and off to our bed. I said "no," and he insisted. At 4:00, I heard him suctioning Jon.

    Jim is paying for it today with pain. I offered to slather him with Aspercreme. He said he wanted to soak in the tub. I reminded him that our tubs are old and decrepit and unsuitable for soaking. They're shallow, but difficult to get in and out of. Nothing relaxing about sitting on a hard surface. He needs his neck and shoulders to soak, but he'd have to scoot all the way down in the tub to get them in the water.

    I suggested a hot shower followed by Aspercreme. He agreed, but that was the end of it.

    Then, he told me he hadn't taken his steroid yet. I handed him 10 mg to see how well it worked. He can always take more if needed. But 10 mg worked well.

    Oh, and he told me that he was going to take 60 mg of Prednisone on his treatment days. I just looked at him, shaking my head. "No, you're not." Later after I reminded him of how sick he was taking 40 mg/day over a weekend, and that when he takes 60, he has to do a daily wean, he agreed with me.

    Yesterday, he protested the arm stretching exercise. He said he was told not to exercise. I explained that meant strenuous exercise. This is passive range of motion. He said it wasn't his muscles that hurt but his bones. I reminded him that both of them are probably hurting from disuse. So a little, gentle movement daily might strengthen them enough to make it more tolerable to do the treatments with less after pain. Also, our joints need exercise as well as our muscles and organs.

    I lectured the standard, "Please stop overdoing" theme. He responded, as usual, that he couldn't lay around and watch me do everything. I replied, as usual, "Yeah, well now I'm watching you laying here in agony. That's not helping me today, because now I'm MORE worried about you."

    Meanwhile, the O2 trache mask is resting on Jon's chest, away from his open trache, so just a trace of O2 is getting to him. His SATS are holding in the low 90s. Congestion has lessened. W pray we're on our way to weaning off of O2.

    Donna, we send you all of our love and prayers and happiness that Nick is homeward bound. He is a brave, resilient young man. Continuing prayers for Nick's full recovery. We Love You!

    Love & Light,



    Rose
    Hi Rose,

    The light exercise is an EXCELLENT idea! I BEG Jim to do it! Based off my knowledge and experience with PT I can tell you that if muscles and joints do not move they become more painful than body parts that do move, because joints lock, and muscles literally shrink and atrophy. A method that my PT always used for me was to teach me to think of the exercise as a fun dance or other fun activity. Tell Jim to move extremely slowly with his arms moving in very gentle circular motions for maybe 3 minutes at a time and build up. Tell him to explore how the joints move as if exploring a foreign country like meditating on or studying each joint. Its very relaxing and reduces my joint pain and spasticity from CP. The exercise may be annoying or hurt slightly in the very beginning but once you build stamina any discomfort will go away entirely. I promise. I heard drinking more water after each exercise session improves blood flow to the brain as well so bonus! If he has a bruise he may not be aligned properly for the treatment. I pray like crazy radiation works!

    Donna, so glad Nick is coming home! Prayers to you!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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