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Thread: Jim's Update

  1. #191

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    Hello Rose ,

    I have time to do sleuthing lately, so I thought I'd see if I could find any problems that happen in the brain while taking Gemcitabine. This is what I found:

    Posterior Reversible Encephalopathy Syndrome (PRES)

    PRES is a rare, reversible neurological disorder that can occur with use of gemcitabine. Symptoms of PRES include seizure, high blood pressure, headache, confusion, fatigue, confusion, any changes in your vision, or difficulty walking or thinking. If you experience any of these symptoms, contact your care team or go to the emergency room immediately.
    https://www.oncolink.org/cancer-trea...abine-gemzar-r

    I hope this helps.

    Jim is doing so well! I do hope this drug has no worse side effects than he's already experienced.

    Your family is always in my prayers...

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  3. #192
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 for your prayers and positive energy.

    Moderator #7 ~ Thank you for the link to Gemcitabine's side effects. Much more extensive than the printout Jim was given, when he started it. PERS sounds very scary. I wonder whether an MRI would detect it, or if the patient just has to wait to have one of the side effects.

    Jim will venture out into the steaming heat at 2 p.m. It's expected to reach 109' here. It's going to be ridiculously hot for the first game of the World Series. We give thanks for air conditioning and television! And we pray that we don't have a power outage, because Jim is not up to connecting the generator, and John will be at the local sports bar/grill to watch the game. I'm sure that John would leave and come here, if we needed him. Let's hope we don't.

    Thanks to all who are following our journey and sending us love, prayers and healing energy.

    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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  5. #193
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    Good work, Moderator #7!

    Rose you and Jim amaze me.

    Blessings,
    ANN
    Last edited by stillstANNding; 10-25-2017 at 06:33 AM.
    There comes a time when silence is betrayal.- MLK

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  7. #194
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    ((((((Hugs to All)))))) ~

    ANN ~ Thank you for your compliment! We don't think of ourselves as amazing, just determined and committed to conquering obstacles as long as we can. And that isn't especially unique. Everyone I've met on BT does the same thing. Persevere.

    So, it's 6:30, and the World Series is on Jon's TV and Jim's TV in the living room. Both of them are asleep. I boiled small gold potatoes while Jim had his infusion today to make potato salad. That will wait now, as I can't make the dressing without making some noise. Of course, the game is blaring in both rooms, but the minute I chop a stalk of celery, they will wake up. It's a small house. But, I don't mind, because I couldn't clean a bigger one.

    The a/c is running, as it's 103' right now. Unfortunately, the downstairs is cold, and the upstairs is like a furnace. We need new insulation. We have two attics.

    The association removed two trees behind us, which offered us shade. It's absurdly bright in the morning, especially downstairs, where we need to get a screen for the back of our patio cover and a new blind for our kitchen. We also need a new toilet downstairs, and an entirely new bathroom upstairs, termite extermination, a new backyard installed, the house painted inside and out, a kitchen floor laid, and I could go on.

    I don't have time to go to the dentist or get new glasses, how am I going to find time for any of the things our home needs? And any construction or projects for our home are difficult to schedule around Jon's and Jim's needs.

    I digress.

    Jim did not ask Dr. P what she meant about giving him a brain scan.

    I charted all of his side effects, day, time, duration, treatment, and results on a piece of scratch paper, which Jim took with him. I forgot to write in big letters: BRAIN SCAN? My bad. I know that I should have done that, if I hoped for an answer.

    Jim's blood work was sufficient to get an infusion today, but everything is low, where last week his WBC was normal, and the others were low normal. So, she is giving him a rest next week. No Halloween infusion for Jim. We pray that his blood recalibrates.

    Dr. P said to keep taking steroids for symptoms. Jim said, "I don't take them until I need them."

    She said, "Maybe you could avoid that severe pain by taking them at the onset of the symptoms, since you know they will get worse."

    Jim replied, "Hmm ... where have I heard that before?" (Referring to me, as that's what I keep telling him to do.)

    Every day, a new beginning to keep moving forward.

    Thank you all for your love and support ~

    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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  9. #195
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    You're welcome Rose! I hope the break from Chemo helps Jim's system.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  11. #196
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    Rose, I too hope this weeks break from the chemo will give Jim the rest and healing time he needs to start over again.

    I think of the 3 of you so much and have all of you in my daily prayers.
    Virginia

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  13. #197
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4 and Virginia for thinking of and praying for us.

    The side effects are arriving a little later than the last 2 infusions. Jim had a headache last night, which resolved with Tylenol. Today, he had neck and shoulder and knee aching, so I talked him into taking 20 mg of Prednisone. He is feeling better now.

    When Jim was explaining that he's "just not feeling good," he said he knew he shouldn't complain. I told him that I'd hardly call it complaining, when I have to interrogate him to get him to tell me how he's feeling! We agreed that it could be so much worse. In April, we thought that he would be dying about now. It's all about perspective. As long as we are able to treat his symptoms effectively, we are doing well.

    Thank you to everyone, who is following our journey and sending us positive energy. We are so very grateful.

    Love & Light,



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

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  15. #198
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    Rose, As always your family is in my daily prayers. I agree that you and Jim are pretty amazing! You may not realize this but not everyone steps up as you both do when needed not everyone has the positive attitude you both have and not everyone has the unconditional love. Not everyone has the energy you both have even when there's really no energy left. I do look up to you and I do believe you both are truly amazing! So please don't forget that. Don't forget that you both go above and beyond for each other and for your son. Please be sure to take care of yourself as well as everyone else. I know "sure when and how right?" But try... Also know that you are in my thoughts and prayers. ((((HUGS))) from afar.
    Mary Grace

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  17. #199
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    Hmmm, reading all this (many of which you've sent me in emails) and worrying and wondering. How is Jim tonight? Any progress on Jon's trache? Thinking of you always and praying, always. Love you, Rose! 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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  19. #200
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    Thank you for your sweet and kind compliments. Maybe it's because this is the only life I know that I don't feel particularly amazing. I can't imagine not doing everything that I've done and continue to do.

    In 1986, when I'd been unemployed for a year, with no prospects for employment in that economic climate, I bemoaned to a dear friend that I needed work. She said, "You work. You are doing God's work. Something will happen to make that financially secure for you." Sure enough, I found the IHSS program.

    I rely heavily on my faith and my prayerful connection to God. It's not a crutch. It's a bridge between the realms. And it works for me, in keeping me strong through adversity and keenly aware of the miracles and blessings in my life.

    Of course, I am weary and sometimes woeful, but I strive to find joy in each day. Never have I viewed my life as a burden.

    I have an incredible support system, including my friends here, so I don't walk alone.

    Thank you so much for being my friend and for your continuous support and prayers.

    Donna ~

    Jim has been feeling much better for the last couple of days, so I think he's over the worst of the side effects. He's definitely glad to skip chemo this week. He's taking advantage of this time to rest, while we hope that his blood cells are recalibrating.

    Yesterday Jon's nurse, who hadn't seen Jim/us in a month, and the Toenail Ladies, who hadn't seen Jim/us in 9 weeks, commented on how well Jim appears. And he does, especially considering how gaunt and ill he looked and was January through April.

    Jim is maintaining his weight and eating very well.

    Now that the weather is much cooler, I'm going to encourage, possibly nag , him to start walking. We live in a perfect neighborhood to take walks, with lots of greenbelts, squirrels, rabbits, birds, and lots of folks walking their friendly dogs.

    Part of the pleasure I receive from my walks is chatting with neighbors and petting their dogs, who often pull on their leashes to get to me. What a great stress reducer it is for me to pet these adorable, loving dogs, particularly since we aren't inclined to get another dog. I just don't have the energy to provide care for a pet. Our sweet Cocker Spaniel was a stray, and she had many health problems, including seizures, during her 11 years with us. I just can't do that again.

    The good news is that Tylenol cured Jim's initial headache after his last infusion, and he only needed 2 steroids a few days later for aching muscles. We are hopeful that his body is adjusting to the Gemcitabine now, and his adverse effects will get less as he continues on this drug.

    Much love to you, Donna, and gratitude for standing by us for 17 years.

    Thank you to everyone, who is following our journey, and sending healing, positive energy and prayers. We are so grateful for your love and support. Please know that you are all in our prayers too.

    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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