Page 76 of 92 FirstFirst ... 264666717273747576777879808186 ... LastLast
Results 751 to 760 of 912

Thread: Jim's Update

  1. #751
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,184
    Blog Entries
    1

    Default

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

    Just wanted to bring you up to date on Jim.

    Because he insists on relieving me in the wee hours of the morning, and Jon is waking up shortly after I go to bed, Jim is sleep deprived. He sits for awhile with Jon, then he needs to lay down on his nest with the heating pad. So, heís up and down for a few hours, and that exhausts him.

    Every morning, after his breakfast, Jim indulges in two small cups of espresso. Then, he lays down and tries to nap, but he gets up every 45 minutes to an hour to pee. Of course, daylight is streaming in, and there is always noise in the neighborhood.

    After lunch, he beds down again, and as the sun sets, heís able to sleep for a few hours.

    I suggested that he skip his espresso for one day to see if his need to pee decreases. He did that today, and yes, it helped. But he says he doesnít want to give up his coffee. He thinks he might have it later in the day. But thatís after his lunch or before bedtime at night. Neither of those are good options.

    Heís been coughing a lot more recently, sometimes to the point of nausea. This morning he had no interest in breakfast but ate a couple of slices of toast with Marmite on them. (UGH! I canít even stand the smell of it! But, heís British, and he loves it.) Then, he had a bowl of soup for lunch. Iím concerned that his appetite is waning.

    And yet, he ate 4 tacos the other night, so????

    His weight is excellent at 167. The most heís weighed in years.

    If he is hurting from turning Jon for the nurseís visits, he hasnít told me so. Believe me, I ASK! (And prod!) He only took his maintenance dose of 5 mg Prednisone today. So, this is a blessing.

    He sees Dr. K on Weds. 1/16, and heís scheduled for another infusion on Friday, 1/18. Dr. K will probably order Brain and CT scans for the end of February.

    Thank you all so much for your continuing prayers, love and support. We keep you and your loved ones in our prayers every day.

    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.

  2. The following 3 users say "thanks"


  3. #752
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    130

    Default

    Decaf espresso (there IS such a thing) may decrease the peeing a bit while still letting him enjoy the coffee experience.

  4. The following 3 users say "thanks"


  5. #753
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,184
    Blog Entries
    1

    Thumbs up

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

    callyflower ~

    Thanks for the suggestion. I asked Jim if he'd be willing to try decaf espresso, and he said he is. He prefers "illy" brand, and they make a decaf.

    I switched to decaf a year or so ago to help lower my BP. I use Don Francisco decaf, and it has a good flavor. I don't miss caffeine. The decaf still works as a diuretic with me, so I don't know whether that will be the case with Jim too.

    How are you and your family? You're 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.

  6. The following 3 users say "thanks"


  7. #754
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    130

    Default

    Rose, I hope the decaf will help. It's worth a try at least.

    My daughter got her first job! She interviewed at the university bookstore on Thursday and started on Friday. She even told her boss in the interview that she has difficulty with interpersonal interaction and understanding non-verbal cues and she was hired anyway. So far she loves the job. Next week will be "rush" week with the start of school so we'll see how that goes. She will be taking 7 hours of classes as well.

    I am scheduled for bunion surgery on the 25th. I am dreading the recovery but I am avoiding activities now because of pain, so it's time. If I do it now I will be ready for gardening in the spring.

    Today is my 3 year cancerversary. Time flies...

    Hugs,

    C

  8. The following 4 users say "thanks"


  9. #755
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,184
    Blog Entries
    1

    Thumbs up

    ((((((callyflower)))))) ~

    By "cancerversary" I presume you mean cancer-free? CONGRATULATIONS!!! Are you having a party?! I'll throw one for you! We'll have that tortilla soup that I keep hoping to make soon!

    I pray that it continues to be so for you forever.

    And CONGRATULATIONS to your daughter on getting her first job! That's fantastic! Good for her being honest with her employer. And thank you, employer, for giving her a chance to prove her worthiness for the job. It sounds like your daughter has a very full schedule with lots of challenges. My prayers are with her for success in every endeavor.

    I'm glad that you're getting that bunion taken care of, and I'll pray that the recovery isn't at all as bad as your expectation. Just focus on the end result: no pain and back to activities. It will be worth it!

    Jim told me to order the decaf, so we'll see how well that goes for him. He loves coffee. The infusion nurses always bring him a cup of coffee when he gets in the chair. He doesn't even have to ask. In fact, he's their favorite patient (so he's been told), because he doesn't ask for anything.

    Be good to yourself, callyflower. You're a trooper, and you deserve to be pampered!

    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.

  10. The following 3 users say "thanks"


  11. #756
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    130

    Default

    Today was the day three years ago that I got my diagnosis. I was anticipating it, and had told no one about the testing. I was lying in bed, paralyzed with fear, and at 9:12 am the radiologist called and told me what I already had guessed.

    My daughter was at her first day of the semester, so I allowed myself to make phone calls while I was alone. I had friends who cried out when I told them, others who spoke to me calmly. My husband was incredulous, and thankfully understood why I waited to say anything until there was something to say. Oh, it was a horrible day.

    But, I got through it and every day since as well. Most days are pretty good now, but nothing will ever be the same.

  12. The following 3 users say "thanks"


  13. #757
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,184
    Blog Entries
    1

    Default

    ((((((callyflower)))))) ~

    Please forgive me for misconstruing the term. I am so very sorry. I'm sorry that you were alone, when you received the news, and that you had to tell your loved ones in a phone call. I can only imagine how difficult this was for you.

    In a way, I do understand, as I vividly recall our pulmonologist calling us after Jim's biopsy with the news. Like you, we already knew what the answer would be. And, it is devastating.

    You did get through it, and you are on top of everything and taking good care of yourself. You have gained wisdom and knowledge, which has been so helpful to us. You are a survivor.

    A friend of ours, who introduced us to the benefits of MMJ for cancer, was diagnosed and treated for ovarian and stomach cancer. She has been cancer-free for 4 years, and she spends the time between her 6 month scans to travel all over the world and now around the states in an RV.

    She knows, you know, we know that cancer changes everything, including you, your spouse, your children, your friends. And that life is fragile, so we must live it to the fullest while we're here.

    Thank you for the many ways you have helped us on our journey. We pray for you and your family and send healing energy your way.

    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.

  14. The following 3 users say "thanks"


  15. #758
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    130

    Default

    No worries, Rose. It didn't upset me in the least!

    Those phone calls are tough! I think all of us remember "the call."

  16. The following 2 users say "thanks"


  17. #759
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,184
    Blog Entries
    1

    Default

    ((((((callyflower)))))) ~

    I'm so relieved. I would never want to upset you!

    Our pulmonologist cared for Michael during his final illness and for Jon twice in ICU in the years following. He knows our family very well, and it was truly difficult for him to tell us Jim's diagnosis. I could tell by his voice that he was tearing up. He's just retired, and now he works in ICU exclusively, but he told Jim that he'd be there for him, if he needs him.

    I suspect that a diagnosis of cancer is difficult for any good physician to deliver.

    I wish I lived close to you. I'd make a big batch of the tortilla soup, accompanied with avocados from Jon's nurse's tree, and bring it to you to enjoy while you recover from bunion surgery.

    In lieu of soup, I send prayers and healing energy.

    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.

  18. The following 4 users say "thanks"


  19. #760
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,184
    Blog Entries
    1

    Default White Blood Cells ~ Nearly Nil

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

    The minute Dr. K walked into the exam room, he asked Jim how he was feeling. Jim said, ďIím tired, really tired, and weak, but otherwise, I feel okay.Ē

    Dr. K said that Jimís WBC was extremely low, almost nil. He wanted to make sure that it was a lab error, because he was disbelieving. So, he sent Jim back for another blood draw, this time not through his port, but from a vein on his hand.

    About 1/2 hour later, Dr. K told Jim that the level was true in both tests. His WBC had tanked.

    Jim called to tell me that Dr. K sent him to the infusion center to get a shot. He couldnít remember the name of the drug, but it is supposed to elevate his WBC.

    Flustered, I called Jonís nurse to ask her what drug he might be getting. She said, ďNeupogen. And he needs it, Rose, if his WBC is almost nil. He could get just the slightest germ and be very ill.Ē

    I looked up Neupogen, and the side effects include: spleen rupture, ARDS Ö a list of horrid possibilities. More common side effects were also concerning, like flu-like symptoms, aching in bones and muscles, fever, rash, etc.

    I called the infusion center and spoke to a nurse about my concerns. I asked her to make sure that Jim is able to walk back across the street to the medical offices to get our van and to drive home. She assured me that Neupogen shouldnít cause Jim a problem, and that most patients tolerate it well. She said, ďThey have to tell you all of the alarming side effects, but they are rare, based on our experience in giving it to thousands of patients.Ē

    She told me that he should take Claritin, if he has aching, because Neupogen is a histamine, and heíll need an anti-histamine to combat symptoms. If his temp elevates to 100.4, I call Dr. K. He needs to drink plenty of water and eat well.

    So, as soon as Jim arrived home, I prepared lunch. His favorite Amyís pocket sandwich and tomato bisque soup. He scarfed it back.

    Then, he went to bed and has been sleeping , with one potty break, for nearly 3 hours.

    We didnít have Claritin on hand, so I called John, and he immediately said heíd get some for Jim and bring it by. He dropped it on the front porch, because weíve agreed that when heís here, he has to don the mask, gown and gloves at the door, with Jimís low WBC. Usually, he comes in and visits with us for a few minutes, before he gowns/masks up to see Jon. Now, it will be before entering.

    Of course, it is flu season, so that applies to everyone, who comes to our home. By everyone, I mean Jonís nurse and John. Toenail gals were here for Jon yesterday, and they wore masks before they entered. But I didnít gown them, and I should have. I need to order more gowns and masks too.

    Itís time for me to start wearing a mask, when I greet the Instacart shopper at the door, as I did last year during flu season. They never enter our home. I bring the groceries in from the front door. I wipe down every item with alcohol before I put it away.

    John will be here Friday afternoon to turn Jon, so we can do wound care. Jim turned Jon yesterday, and it was an obvious strain for him. Jonís nurse was here. She may or may not be on Friday, depending upon insurance authorization for her visit. Of course, I know how to slather stuff on Jonís wounds. In fact, Iíve become a pro at this task!

    I told Jimís infusion nurse and Jonís nurse that Jim keeps telling me to relax and ďstop worrying about me.Ē Itís so infuriating! And Iíve told him so. How can I stop worrying about him? HOW? I canít, obviously.

    Heís my husband, the love of my life, my partner 24 hours a day for 26 years, my best friend, my confidant, my comforter, my rock, my beloved. And heís Jonís and Michaelís dad. Why would I worry about him, then, eh?

    He counters with how much he worries about me. Well, of course he does! For the same reasons that I worry about him. LOVE.

    So, here we stand at this unanticipated crossroads, because heís been rockiní his WBCs for months and months. To have them drop to nothing is a shock.

    This is the beast of cancer ~ the realization that things can make a sudden downward turn, and a new path on the journey opens.

    We are strong in faith, and we are surrounded by love and prayers, and so we move forward with this new path and pray for the right and best outcome.

    Jim will see Dr. K on 1/23, the day before Jimís 71st birthday (ironic, in that our first visit with Dr. P in 2017 was on Jimís birthday), and if Jimís WBC is good, Jim will have an Opdivo infusion.

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

    We love you and hold you and your loved ones close to our hearts and 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.

  20. The following 3 users say "thanks"


Page 76 of 92 FirstFirst ... 264666717273747576777879808186 ... LastLast

Similar Threads

  1. little update...
    By mg12061 in forum Child Neurology
    Replies: 4
    Last Post: 03-01-2014, 08:46 AM
  2. Update...
    By mg12061 in forum Child Neurology
    Replies: 3
    Last Post: 01-15-2014, 09:27 PM
  3. update
    By mg12061 in forum Child Neurology
    Replies: 3
    Last Post: 12-03-2013, 07:20 PM
  4. A little update
    By mg12061 in forum Child Neurology
    Replies: 6
    Last Post: 11-16-2013, 09:08 PM
  5. update...
    By mg12061 in forum Child Neurology
    Replies: 8
    Last Post: 09-16-2013, 09:12 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.