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Thread: A Prayer Request For Jim

  1. #51
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    Hi Rose,
    So so glad the cancer has not spread! Hope the treatment plan appointment goes well! Glad Jon feels better and my prayers continue. Mary Grace has a good idea, Almond Butter is really yummy! Try that!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #52
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Jim met with his radiation oncologist today and received a definitive diagnosis: Stage IV. Using images from his scans, she explained that the cancer cells are in the pleural wall feeding the tumor. The best treatment to eradicate the cells is Chemo.

    She told Jim that unless he is experiencing pain, she can’t really help him at this point. If he has pain, which thankfully, he does not, she can “zap him for 20 minutes” to try to reduce the tumor’s size.

    Jim will have his implantable port placed on Thrs. 2/9, under light sedation. The port will be used to draw blood, as well as to administer the chemo.

    His first chemo infusion will be on Weds. 2/15. This infusion lasts for 5 hours. It is given slowly to ensure that he can tolerate it. The next two days, his infusions will last for 2 hours each.

    Then a break from chemo the following week, and a visit with his oncologist to determine the efficacy of the treatment and how to proceed.

    Jim has been diagnosed with a sinus infection, so he’s been referred to an ENT, which he should see by next week before chemo. His oncologist told him that during the last phases of chemo, the immune system tanks, so this infection could become septic.

    Jim is eating well. He’s drinking his Matcha green tea, and eating yogurt with blueberries and flax seed oil.

    It is all quite stressful, but we are doing our best to keep a positive attitude and employ all of our coping tools to help us on this journey.

    We thank you all for your prayers, love, positive healing energy, and support.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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  4. #53

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    Continued prayers going up for Jim!

  5. #54
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    Hi Rose,
    So sorry it is stage 4! There are people like actress Kris Carr who have had stage 4 for years and are still alive. If you and Jim want an idea of what the chemo treatments might be like check out episodes of "The Little Couple". The wife in "The Little Couple" named Jen had cancer in her uterus(I think that's where it was) and she had the show crew document her chemo treatments and her port placement because she wanted to help other people with cancer. Jen said the chemo made her sleep a lot and if she didn't rest after an infusion she felt dizzy. Her hair also fell out. Jen recovered fully and adopted 2 children. In regards to the immune system people in my family told me that you can keep the immunity up by taking supplements and eating foods that are good for immunity so when/if it does tank it doesn't get as bad and Jim won't feel as fatigued or weak. All my prayers to Jim and you!
    Last edited by funnylegs4; 02-04-2017 at 01:28 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #55
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    Rose, I am grateful that there is now a plan to address the cancer. Lots of appointments. Please take care of yourself as well as Jim and your son.

    Prayers coming your way,
    ANN
    There comes a time when silence is betrayal.- MLK

  7. #56
    Distinguished Community Member agate's Avatar
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    You and Jim are soldiering on--bravo!

    A positive attitude may have a good effect on the outcome.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  8. #57
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Thank you all so much for your love, support and prayers. You are all wonderful friends, and we are so grateful to you.

    ENT RESULT

    Today, Jim saw the ENT about his sinus problem. Good News: simple lavage should relieve it. No surgery, no antibiotics, just lavage. Easy.

    So I ordered the recommended NelliMed pressure spray, as well as another wedge, because we're getting tired of lugging the wedge up and down the stairs. Jim has a queen sized futon "nest" in our living room, as well as the bed in our bedroom. Bed Bath and Beyond is my BFF!

    CHEMO PORT PLACEMENT

    Port placement is tomorrow at the hospital. He has to be there at 7:45 a.m.; procedure at 9:15, with 2 hours in recovery. Our friend, who helps me turn Jon, will be transporting Jim to/from, as he did for Jim's biopsy. He is truly a Godsend.

    Jim can't eat anything after midnight, so I'm going to wake him at 11:00, so that he can eat something, then send him back to bed. I usually don't get to bed before 3 a.m., many times it's 5 a.m. I'm used to it, and I can manage. I am permanently tired. Ha!

    Yesterday, I ran errands for nearly 3 hours, came home with a truckload of groceries, so we're all stocked up. We don't have any windows of opportunity left for me to do this, so I had to do it all in one day. Thankfully, the rain stopped, and the sun came out, just for me!

    IHSS VISIT

    Friday, Jon's new IHSS case manager will visit in the morning, even though I asked for an afternoon visit. I'm quite perturbed that we have to bow to their demands during this strenuous time, but so be it. Jim is Jon's authorized representative, so he has to sign all of the paperwork, which means he has to be here and functional.

    I called her and left a message yesterday:

    1) We aren’t going to wake up Jon, if he’s asleep when you visit. You can look into his room, see him, see him sleeping.

    2) You need to wear a mask; it’s flu season. If you don’t have a mask, we’ll provide one for you.

    3) This needs to be a quick visit. We’ve been in the program since 1986. We’ve been signing these forms longer than you’ve worked for IHSS no doubt. Jim is very ill, weak, and he will have a port placed on Thursday for chemo next week. So we’d appreciate it if you would just come in, give him the papers, see Jon and leave, so that Jim can rest.

    I'll spend all day tomorrow cleaning for her visit. Because, you know, I have so much extra energy to do that.

    She wants to see his Social Security Card. None of Jon's previous case managers have asked for that. They want his Medi-Cal card. I can't find Jon's SS card. I looked for an hour today and gave up. I'm not looking again. His SS# is in the System, for crying out loud.

    She also wants to see a photo ID card. Jon doesn't have one. Never been asked for this before either.

    He has lived here for 40 years, same address and phone number. The amount of documentation on Jon in this county, from IHSS to Regional Center, to Medi-Cal, to the hospitals and physicians, must be enough to fill a Costco Warehouse. Why do I have to keep re-inventing the wheel with this agency?!?!

    I don't need this right now!!! (Ranting ... sorry ... but you know I'm not a fan of the System ...)

    SCHEDULING FOR JON'S NEEDS

    Jon slept 10 hours today from 7 a.m. to 5 p.m. How do we fit in an appointment for him with that kind of schedule? We had to wake him on Monday to turn him, when our friend came over to help us. (Jim doesn't do anything difficult, just guides Jon's legs). We tried to keep Jon awake, but he couldn't hold out. It's so frustrating.

    The nursing agency assigned a CNA to turn Jon. A young woman. Well, Jon is 6'1" tall and weighs about 200 lbs now with the lymphedema. We need a young strong man. And the CNA called to tell us that she would be here yesterday. I called our nurse coordinator and told her that I have to determine the day and time of the CNA's visit. Not be called the night before, when it works for them. And we need a male CNA, who is ultra strong.

    I haven't followed up, because there has just been too much else happening.

    It is non stop now, with phone calls, appointments, testing, coordination. We get a break on the weekends.

    And, I won't lie ... it is quite stressful.

    HEALTH HISTORY MANIA

    Everywhere Jim goes, whether it's to a doctor or for a test, he has to fill out the same forms. Family health history, his health history, blah blah blah. There's this thing we call a "computer," in which all of this information is stored. Why must he repeatedly fill out the same questionnaire. It's driving him bonkers.

    His pre-op call for tomorrow's port placement went well today. The gal interviewing him about his health history, so he doesn't have to fill out forms tomorrow, was very sweet and compassionate. That helped.

    Everyone in Jim's encounters is amazed that he hasn't been plagued with health problems all of his life. And that he doesn't take any kind of pharmaceuticals. "What meds do you take?" He answers, "None." They are astounded.

    His vitals are always perfect. His blood pressure, at his age, and with Stage IV cancer, is nearly perfect every time it's taken. The majority of his blood work is always normal. His heart appears to be fine from all of the CT scans and MRIs he's had.

    Every doctor he's seen has been amazed at how well he seems, given all that is going on inside of him.

    We hold on to this. And we move forward with hope for a cure. But if not a cure, then long term survival. We just take each day as it comes, and deal with whatever Life is throwing at us. What else can we do? Falling apart gets us nowhere fast. So we stay strong and positive.

    Thank you again for your love, support and prayers. We feel your energy, and we thank you for the blessing of your friendship.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 02-08-2017 at 08:06 PM.
    Mom to Jon, 47, (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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  10. #58
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    Rose, you amaze me!

    ANN
    There comes a time when silence is betrayal.- MLK

  11. #59
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    Thank you so much for the update Rose. Can you make a print out of the answers on the forms as a short cut? I'm not a fan of the system either. Rant as much as you like! I'm sorry Jim is weak but you and Jim are doing really well. Please keep us posted on the port placement and treatments.
    Last edited by funnylegs4; 02-08-2017 at 11:46 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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  13. #60

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    Dear Rose,

    How is everyone doing? Thinking of Jim after his port placement. Continued prayers being sent up for all of you.

    Marcie

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