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Thread: Jim's Update

  1. #701
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    Rose, So glad things are going well. I love reading these positive posts. You and your family are never far from my thoughts and always in my prayers.

    Mary Grace

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  3. #702
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    Default Blood, Vicodin, and Radiation

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

    Jim coughed up blood, beginning Sunday afternoon. Small amounts, about the size of a nickel or dime, mixed with sputum. He had some very hard coughing spells, wracking his body.

    Yesterday, he was aching all over, nauseated, and still coughing up blood. He took 20 mg Prednisone and spent the day in bed, sleeping. He asked me to email Dr. K, which I did.

    I think his RA pain stemmed from moving Jonís cases of formula with me and from coughing.

    The blood stopped last night, and his sputum has been clear all day. RA pain was gone last night, and heís been fine on his 10 mg wean dose today.

    Dr. K didnít reply, but Jimís health portal was updated with a new medication: Vicodin. Tylenol for pain and codeine for cough. Jim already takes Tylenol for headaches, only when needed. He has a bottle of codeine in the medicine cabinet from last year. He took it a few times primarily to help him sleep. He doesnít really need this med.

    And then, Dr. Kís nurse called leaving a message from Dr. K. He wants Jim to make an appointment with a radiology oncologist to discuss ďoptions.Ē

    At his last visit, Jim and Dr. K discussed radiation, and Dr. K said that it was a last resort. Dr. K is not a fan of radiation, and he was honest with Jim that it could cause the cancer to break off and spread, similar to surgery.

    So, now a spate of coughing up blood for a couple of days, and one day of RA pain, after weeks of no RA pain, constitutes investigating the ďlast resort?Ē Or does Dr. K want Jim to meet with the radiology oncologist just so that Jim knows what it entails, should the time come, when he has to make the choice?

    This is where I think Dr. K should actually TALK to Jim, before prescribing Vicodin and a radiology oncologist consult. Jim and I are wondering if Dr. K thinks Jim is at the place where the ďlast resortĒ needs to be considered, implemented or rejected.

    Clinically, Jim is absolutely fine. His vitals are outstanding. His blood work is remarkable. Heís maintaining his weight and eating well. His color is perfect. Heís very functional and moving well. His short term memory is getting worse, but thatís related to his skull radiation treatments, most likely. Last brain MRI was clear.

    Jim says, ďItís fine. Just email Dr. K and tell him that Iím all right now. And Iíll discuss the radiology oncologist with him when I see him at the end of the month.Ē

    I would prefer that Dr. K call Jim now and talk with him. He could call to ask Jim how heís doing, get more details, and then determine that Jim doesnít need Vicodin, and heís not on his last legs yet.

    As we discussed this today, Jim revealed that he is disinclined to go for radiation. Heís concerned that something will go awry, the cancer will spread, and heíll be in worse condition than if he hadnít had the radiation.

    When he told me this, I recalled my great uncle in the late 1970s, who had stomach cancer. He went through chemo, and it was horrible for him. When he was nearing death, he told my great aunt, ďIf Iíd known the treatment was going to make me feel like this, and I was still going to die, I would never have done it.Ē

    So, I will email Dr. K, but I will likely add my two cents. Iíd like to know why he decided to send Jim to the radiology oncologist now. Did he base this decision solely upon Jim coughing up blood?

    I have lots of questions. Jim is cavalier and accepting. Iím sure thatís the best way for it to be.

    Thank you all for your love, support, prayers, healing, positive energy. We pray for all of 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 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. #703
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    Rose, Thanks for understanding my stroke talk with Mary Grace.
    In my experience you have to be really specific with doctors because even they jump to worse case sometimes. I had one guy working on my heart stuff I think he was a resident or intern who seemed to believe my CP was an adult stroke caused by my heart murmur and I had to explain that no, the murmer has not caused a stroke. Perhaps the tumor is dying and causing blood to come up as it dies? That would be my biggest hope here. Big prayers on the way.
    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. #704
    Distinguished Community Member agate's Avatar
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    Rose, I'm so sorry Jim has been having these problems. I can understand reluctance to choose radiation. . I guess it all depends on how willing you are to take that gamble and how much you're willing to put up with.

    I agree with funnylegs. No matter how well you think a doctor knows your case, you do have to start at Square 1 with them and clue them in about facts they may have forgotten. They don't seem to have the time to leaf through a chart to refresh their memories, and they see an astonishing number of patients on a typical day.

    --Hope that you're nowhere near the shooting I've been hearing about on the news.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #705
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    Oh, dear - Rose, I can see why you are so worried. I would be too. It's so difficult when the doctor is changing orders without speaking with you. Why? Based on what exactly? Does Dr. K have an accurate assessment of what's going on with Jim at home? Are there test results back that the doctor has but that you don't know about? (That's impossible with the portal, right?) Do you have a speaker on your phone at home so that you can both be on the call with Dr. K? Hopefully this will be cleared up soon. Codeine for cough sounds right - it's the magic bullet to stop coughing. But it's very constipating - not sure if that's an issue with Jim. I'm thinking of you and I hope all this becomes clearer very soon. Love and prayers, Donna 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. #706
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    Rose, I am sorry to hear this. The fact that his vitals, weight, coloring, etc are all good is something I would want to remind Dr. K about I think. You did not mention any pain and I was just wondering why Vicodin if he is not in pain. Also wondering if there is any test that Jim has not had recently that might reflect why the sudden onset of blood.

    I agree that it would be a good thing if Dr. K called Jim and got all his latest symptoms and how he is doing straight from Jim before making any other decisions. Agate is right in that Doctors see a lot of patients in a day. I know Dr. K knows Jim and remembers his case well, but he may be reading more than is necessary into the coughing up of blood, and then he may not. He needs to know how much it was and that it has subsided, in my opinion.

    Making these decisions is so hard. You and your family are in my thoughts and prayers.
    Virginia

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  13. #707
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    Rose, I hope today is a better day and that there is more clarity on what action, if any, should be taken. I agree with everyone else that Dr. K should speak directly to Jim and the idea of using a speaker phone is perfect.

    Bless you all,
    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #708
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    ((((((Hugs to All)))))) ~

    Thank you funnylegs4, agate, Donna, Virginia, & ANN ~

    I sent an email on Jim's behalf today to Dr. K. He had replied saying that he wanted Jim to have radiation on the "lung lesion." I wrote that Jim had stopped coughing and coughing up blood and that he was feeling fine. I stated that Jim is concerned about radiation, after Dr. K told him the risks, and that Jim doesn't want to do anything until he sees Dr. K at the end of November. I said that Jim doesn't mean to be noncompliant. He just feels that this is not necessary right now.

    I think it's possible that Dr. K thought Jim was in a dire situation. I'm hoping that my email clarifies Jim's condition better.

    We do have a speaker phone, and we've used it many times to talk to physicians. If Dr. K still wants Jim to have radiation, then we'll arrange for a call with him.

    agate ~ We do not live near Thousand Oaks, but we are deeply saddened by this mass shooting. It's a beautiful area, with a very close knit community, and they are all hurting so much right now.

    I've watched some news coverage today. People lined the streets and freeway with their hands over their hearts, and some saluted, as the hearse drove from the hospital to the coroner for the autopsy of the officer, who was shot as a first responder. More than 500 people lined up at a local high school to donate blood for the 22 injured victims. A vigil is being held tonight, expecting a large turnout. Parents of children who have been murdered in other mass shootings are arriving to support the parents of the Borderline Bar victims. I cannot fathom the depth of their pain.

    As if this tragedy wasn't enough, there is a wildfire, being whipped by strong Santa Ana winds, just outside of Thousand Oaks. Hwy 101 has been closed, which might make travel difficult for folks in the area. Evacuations are also underway.

    My heart just breaks for all of them.

    I will update Jon's thread. He had a very very bad night.

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

    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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  17. #709
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    Smile

    :) Rose would you post a link to Jon's site please? or PM me please Thanks, Jeanie :)
    Last edited by Jeanie Z; 11-11-2018 at 04:41 PM. Reason: or PM me please

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  19. #710

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    How’s Jim doing today?

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