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Thread: Jim's Update

  1. #461
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up

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

    funnylegs4 ~

    Jim used to use a lavage system for his sinuses, but he hasn't used it in years. From Donna's links and others, I've read that the flushing of the ear should be gentle. I guess a nasal lavage is gentler than a Water Pik. We're using a 10 cc syringe with warm water for flushing, which is probably the same principle.

    Jim only had one Debrox dose last night, and one today, so far. He doesn't feel anything, although it is supposed to foam. I looked as closely in his ear canal as I could, and I didn't see any foaming. He said it felt cold yesterday, so I warmed the bottle in a cup of warm water.

    I don't know whether this ear wax buildup correlates to radiation, or Opdivo, or steroids, or none of the above. I just know that the TV and stereo are at top volume these days, and we need to fix that soon. I don't want to lose hearing in my good ear!

    Jim woke up this morning with body aches. This is about the time, a few days after the infusion, that it starts to kick in. So he took 20 mg of Prednisone, and it seems to be abating a little. This is the bargain we struck with Opdivo ~ that he'd remain on 5 mg and only take more at the lowest dosage to mitigate RA pain.

    He coughs quite a lot, and sometimes, he coughs so hard that I fear he might break a rib. No blood, thankfully.

    MY BIG ACCOMPLISHMENT

    $$$ TAXES! $$$

    Yesterday, a total of 3 hours; today, a total of 3 1/2 hours; tomorrow, probably another hour or more. I finished the final draft today.

    We are considered Self-Employed, so we have to pay taxes on our business. We're funded by government programs for Jonathan. So, the government giveth, and the government taketh away.

    How petty is this?

    In 2016, business mileage was reimbursed for 54 cents. In 2017, the mileage reimbursement is 53.5 cents.

    I dot all my "i's" and cross all my "t's," because I never want an IRS audit. EVER. I have receipts and documentation for everything since 2000. I just don't want to have to haul it all out, and go through the stress of an IRS audit.

    The government gets more than its fair share from us. Some years our expenses are greater than other years. 2018 will be one of those years, since we've decided to buy a new pump and mattress for Jon, so that if his current one fails, we can replace it immediately. We can't risk days without a mattress. And we need a back up pulse ox. Even though we rarely use it, we should also have his lift serviced.

    So, finishing the taxes is a big sigh of relief for me. I'll be even more relieved, when it's all in the mail.

    Thank you all for listening, praying, and supporting 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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  3. #462

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    Hi Rose!

    It sounds as though Jim has quite an earwax impaction, and the OTC may not be up to the task at hand. A trip to an ENT would make quick work of the problem, and then the OTC stuff can be used for routine maintenance.

    Have a great week!

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  5. #463
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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 used to use a lavage system for his sinuses, but he hasn't used it in years. From Donna's links and others, I've read that the flushing of the ear should be gentle. I guess a nasal lavage is gentler than a Water Pik. We're using a 10 cc syringe with warm water for flushing, which is probably the same principle.

    Jim only had one Debrox dose last night, and one today, so far. He doesn't feel anything, although it is supposed to foam. I looked as closely in his ear canal as I could, and I didn't see any foaming. He said it felt cold yesterday, so I warmed the bottle in a cup of warm water.

    I don't know whether this ear wax buildup correlates to radiation, or Opdivo, or steroids, or none of the above. I just know that the TV and stereo are at top volume these days, and we need to fix that soon. I don't want to lose hearing in my good ear!

    Jim woke up this morning with body aches. This is about the time, a few days after the infusion, that it starts to kick in. So he took 20 mg of Prednisone, and it seems to be abating a little. This is the bargain we struck with Opdivo ~ that he'd remain on 5 mg and only take more at the lowest dosage to mitigate RA pain.

    He coughs quite a lot, and sometimes, he coughs so hard that I fear he might break a rib. No blood, thankfully.

    MY BIG ACCOMPLISHMENT

    $$$ TAXES! $$$

    Yesterday, a total of 3 hours; today, a total of 3 1/2 hours; tomorrow, probably another hour or more. I finished the final draft today.

    We are considered Self-Employed, so we have to pay taxes on our business. We're funded by government programs for Jonathan. So, the government giveth, and the government taketh away.

    How petty is this?

    In 2016, business mileage was reimbursed for 54 cents. In 2017, the mileage reimbursement is 53.5 cents.

    I dot all my "i's" and cross all my "t's," because I never want an IRS audit. EVER. I have receipts and documentation for everything since 2000. I just don't want to have to haul it all out, and go through the stress of an IRS audit.

    The government gets more than its fair share from us. Some years our expenses are greater than other years. 2018 will be one of those years, since we've decided to buy a new pump and mattress for Jon, so that if his current one fails, we can replace it immediately. We can't risk days without a mattress. And we need a back up pulse ox. Even though we rarely use it, we should also have his lift serviced.

    So, finishing the taxes is a big sigh of relief for me. I'll be even more relieved, when it's all in the mail.

    Thank you all for listening, praying, and supporting us.

    Love & Light,



    Rose
    Hi Rose, anytime I put water in my ear(attempts at cleaning) my hearing gets markedly worse. Like the water gets stuck in the canal and I have to wait for the water to dry to hear again. The Navage clears everything via nose so my ears don't feel clogged with water. In regards to the TV I believe there are devices that work a bit like hearing aids which you can program to respond to the TV only so the TV will sound louder to Jim than to you. I used to see devices like that advertised a lot. I'll post again if I remember the name. If worse comes to worse turn on the closed captions for the TV. That's what open captions and closed captions are designed for. I use closed captions, even though I have perfect hearing, when I want to watch something but can't have the volume on for one reason or another. It's part of why I open captioned my films. I'm sorry Jim was in pain and coughing. I hope that subsides. Yay for end of taxes! The govt takes as much as it can get unfortunately. Prayers always.
    Last edited by funnylegs4; 04-08-2018 at 07:42 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  7. #464
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile Hear Ye! Hear Ye!

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

    callyflower ~

    I think you're right about the wax being impacted. It's not budging with the Debrox. I found the name and phone number of the ENT, who Jim saw last year about his sinuses, prior to starting chemo. So, Jim will call tomorrow to schedule an appointment. It's just annoying to have yet another appointment. But I'm sure that Jim will be relieved to be able to hear again.

    Jon and I will also be relieved. When Jim gets up around 2 or 3 a.m., and he offers to relieve me, he turns on Jon's stereo (it helps to relax Jon), if Jon is still awake. Because Jim can't hear it, he turns up the volume. I've had to remind him several times that we're trying to get Jon to go to sleep, not wake up and party!

    funnylegs4 ~

    Oh, I get it now! The nasal lavage relieves the pressure in the ears. That's a good maintenance idea for Jim, if I could just get him to do it. But I think the wax build up is so severe now that he needs tiny miners to go in there and dig it out. That's what the ENT is for, so we'll let him do the job! Jim liked the ENT, who is also a Dr. K (same last name).

    Great suggestion about closed captioning for Jim! He watches TV when he relieves me, has a cuppa and a sandwich. Sound off. Closed captioning would be perfect then.

    The other night, after I went to bed, he turned on the sound on the living room TV, and I jumped out of bed, ran to the stairs, and turned on the light to get his attention. Then I did a charade routine to tell him to turn it down, because he couldn't hear me!

    Jim is back on his 5 mg maintenance dose of Prednisone, and he is not complaining of pain. So, thankfully, he got past that in one day.

    I do believe that John's return in turning Jon has helped alleviate a lot of Jim's shoulder and neck pain. He didn't want to admit it to me, because he knew we were keeping John at bay, because of flu season.

    But Jim finally confessed to me that Dr. K said, "You shouldn't be doing that really. Too strenuous."

    Jim said that he explained to Dr. K why he was turning Jon, which Dr. K appreciated. Dr. K shook his head with compassion, "You have a very challenging situation there."

    So, when we told John last night that Dr. K advised Jim not to turn Jon, John said, "I agree. So, I'm here, and I'm going to continue to be here as much as possible to make sure that you don't have to do it."

    What a blessing John is!

    So, we move forward during this week of Opdivo Break. It was 92 degrees here yesterday, and it fried my mini pink roses. I watered them and put them in the shade this morning, hoping they will bounce back. The yellow roses fared better as they were out of the direct sun.

    This morning, it was cool and gorgeous on my walk. The Canadian geese have left the lake, and today, I spotted one lone egret, preening so elegantly. I'm grateful for our home and neighborhood.

    I have met so many neighbors in my 12 years of walking, and it's always nice to encounter someone on the trail or driving by, waving, smiling, chatting. Most people have dogs, and they love me, because I love them. So, I'm able to enjoy petting and loving a sweet dog for a few minutes, which is great therapy for me.

    Thank you all so much for your ideas, suggestions, sharing your experience, knowledge and wisdom with me. And for your positive, healing energy and prayers, we are truly grateful.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 04-10-2018 at 05:20 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  9. #465
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    Thumbs up Opdivo Infusion #4 And More!

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

    Jim had a rough night. He woke up after a few hours of sleep at 1:30 and refused to try to go back to sleep. He wanted to take over with Jonathan, so that I could go to bed. I refused and stayed up until 3:00, but he just kept watching TV with closed captioning (thanks funnylegs4!).

    Jon fell asleep at 4:15, and when Jim tried to shut down then to sleep, he was restless. His mind wandered in assorted directions about things, which shouldn’t even be on his mind. Eventually, he thinks he slept for 45 minutes.

    Of course, he felt lousy today, and he needed to get ready for his visit with Dr. K, blood draw, and infusion. He refused to allow me to iron his Hawaiian shirt (button down shirts, in lieu of T-shirts, are required to access his port for blood draw and infusions). He ironed his shirt. He says it’s therapy for him.

    Ah, but later in the day, while chatting with me on the phone as he waited for his infusion, he revealed that if he stands for more than 10 minutes, his lower back begins to hurt. I know that feeling very well, as it happens to me all of the time.

    STUBBORNESS

    I had printed out 2 pages of Jim’s symptoms and questions. Jim wasn’t keen on taking them to Dr. K. He said, “I just want to concentrate on getting rid of the cancer.”

    I explained that informing Dr. K of what he’s experiencing is part of that process.

    Then, Jim said, “I don’t want to take any other drugs!”

    I explained that he won’t take any drugs that he doesn’t want to take. But the doctor has to know what he’s experiencing in order to treat Jim more effectively.

    Jim took the long list and showed it to Dr. K, who was happy to discuss all of it with Jim. As I expected. I need to remind Jim that if I could go with him, I’d be using the list to interrogate Dr. K!

    BLOOD TEST RESULTS

    How does “EXCELLENT” sound to you?

    It is truly music to our ears!

    Dr. K was nearly gleeful, when he told Jim about his blood work. He continually said, “I can’t believe how well you are doing! You look so good! Your numbers are so good! This is great!”

    So, off to Opdivo Infusion #4. Jim had to wait an hour, because somehow his time was changed from 1:30 to 2:30, and no one told him. But, he had one of his favorite nurses, and as always, she took very good care of Jim.

    Jim handed the phone to his infusion nurse, who I know was too busy to chat with me, but she was very sweet, and has the full picture of our life as a family. She told me that I am doing “a very good job” and that it is very clear how much Jim loves me and Jon.

    SYMPTOM ANALYSIS

    Dr. K said that all of Jim’s symptoms are attributable to Opdivo. For his dry mouth, his blood draw nurse gave him a sample of Biotene. Never mind that I’d suggested that to Jim a month ago!

    HUH? What’d Did You Say?

    The Debrox didn’t work on Jim’s ear wax. Dr. K looked in Jim’s ears and said that he saw minor improvement. Dr. K and the blood draw nurse told Jim to try again for a week. So, we will be diligent about doing it twice a day and rinsing with warm water.

    Jim’s inability to hear is troublesome for him and me. The other day, he turned on Jon’s stereo, and I was upstairs cleaning, and I heard Elton John and wondered whether our neighbors, who were having a patio party, and are too young to be Elton fans, had turned up their stereo.

    When I met up with Jim downstairs in the kitchen, I told him that the stereo was too loud. He said, “I can’t hear it!”

    And I shouted, “Well, the rest of the neighborhood can!”

    Jim then went to sleep, with the patio doors open, the neighbor’s music blaring and partiers screaming, one in particular, who was having a conflict with her spouse. I’ve never heard the F-word used so many times in so many ways as I did that evening. That woman was really drunk and very angry for nearly 3 hours.

    But Jim heard none of it!

    THE FUTURE

    Dr. K is optimistic. Given Jim’s clinical presentation and the test results, he feels hopeful that Jim’s CT scan and brain MRI will show good results.

    Jim is scheduled to see Dr. K on 5/2 (tests are on 4/27). He’s also scheduled for his 5th Opdivo infusion that day, if his blood work continues to be excellent.

    When Jim asked how long he would be on Opdivo, Dr. K replied, “Probably the rest of your life. But, after we see the test results, we may find that we can reduce the number of infusions and their frequency.”

    We are uplifted and hopeful.

    And Jim just loves Dr. K and his staff. He says that Dr. K treats him like a family member. With love and concern, and a sense of humor. We give thanks that Jim is now with Dr. K. As it should have been from the beginning. Dr. K is supporting Jim and giving him a chance at a longer life. That is all we’ve ever wanted and needed.

    AND NOW …

    Jim is napping on his futon nest, wrapped in a blanket made by our dear friend, Liz, who is now an angel watching over us.

    When Jim arrived home, I was in the process of chopping veggies for a scrumptious spaghetti dinner. Jim told me on the phone, as he waited for his infusion, and we were discussing his appetite loss: “I can always eat spaghetti.”

    It’s ready to go, with plenty of Field Roast Italian sausages for protein, whenever Jim wakes up and wants to eat.

    THANK YOU

    For your love, support, prayers, healing thoughts, positive energy and walking beside us on this journey. You are a blessing!

    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. #466
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    This is such great news, Rose. The best.
    Thank you,
    ANN
    There comes a time when silence is betrayal.- MLK

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  13. #467
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    Rose thank you for the update. I'm sitting here smiling! So much good news in your post. I will keep the prayers coming for your lovely family!

    I have to add that ironing IS my therapy! I LOVE to iron and if I'm stressed watch out everything you own will have a crease sharp enough to cut! I have always loved ironing! Kathleen's teachers used to tease me about the creases in her sweat pants LOL.

    Mary Grace

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  15. #468
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    Thumbs up

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

    ANN ~

    It's always my pleasure to deliver good news! I mean that!! I can't even imagine the thousands of times in 18 years on BT that I posted "crisis" news. I take nothing for granted!

    Today, when I logged onto BT, I thought, "I wonder what's new here this afternoon?" I saw the post on the MS forum, "Sad News," and clicked on it. Like you, and all of the folks on the MS forum, the news of Vicky's passing shocked me, especially because it is unexpected.

    For those here on the CN forum, who don't know Vicky, her voice was active on BT for many years, and she is very loved by her MS BT family. If you would like to offer your condolences to her forum family and her partner, Len, please find Len's post about Vicky's passing here:

    http://www.braintalkcommunities.org/...02430-Sad-news

    I will truly miss Vicky. God rest her beautiful soul.

    Vicky's passing is a reminder to us all that life is fragile and fleeting. And that every second is precious. Fill it with love. Find joy everywhere, in a gorgeous blue sky,in the sunset, in a majestic tree,in a scampering squirrel, in the laughter of a friend, in a stranger's smile, in hugs from loved ones, in the smallest and biggest things.

    The meaning of life on Earth is rather simple: Love. It is the lesson of most religions. It is what we all seek and yearn to have and give. It's what our pets give to us unconditionally. It's our purpose.

    Love is what unites us and makes us whole. It makes the world go round. When we abandon love, we have chaos.

    LOVE conquers all.

    Mary Grace ~

    I'm going to fly you across the country to our house, as I have a stack of ironing just waiting for you! You will leave feeling so refreshed and rejuvenated. I'll add a day at the beach and plenty of smoothies.

    My aversion to ironing is two fold: a) as a child, I was required to iron by my mother and my grandmother ~ sheets, handkerchiefs, shirts, pants, linens, etc. b) standing to iron is hard on my lower back. I'd rather use that energy cooking, taking out the bins for trash day, laundry, pulling Jon up in the bed, etc.

    Jim is truly a Renaissance man ~ he can sew, cook, and iron, and he can (could) build/repair/install anything. Unless I know that it's a strain on Jim to iron, I don't discourage him or do it for him, while he showers. It's important to Jim to do things. To take some of the "burden" (I don't call it that) off of my shoulders. So, i let him iron his shirt. He's happy. I'm happy.

    OUR UPDATE

    Last night Jim slept very well, thankfully. He didn't wake up at 2:00 to take over for me. But Jon fell asleep about 3:15, so I was in bed by 3:30. Jim said he woke up shortly thereafter. Good. I wanted Jim to sleep. He also napped this afternoon, before John visited to turn Jon.

    Jim is experiencing no pain today, and he hasn't had a headache for 2 weeks! How wonderful is that?!

    We remain hopeful and encouraged. And we thank you all for your love, support, prayers, positive, healing energy. You are a blessing.

    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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  17. #469
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    More good news, thank you, Rose.

    I am in agreement w you about ironing. It's work. I ironed whatever was age-appropriate starting as a little girl. Now I try not to buy anything that needs to be ironed. Peter, OTOH, loves to iron. He puts on the radio and goes into a zone and it's his meditation. Lucky me. Lucky you.

    ANN
    Last edited by stillstANNding; Yesterday at 05:04 AM.
    There comes a time when silence is betrayal.- MLK

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