Page 42 of 66 FirstFirst ... 1232373839404142434445464752 ... LastLast
Results 411 to 420 of 656

Thread: Jim's Update

  1. #411
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    994
    Blog Entries
    9

    Default

    Thank Heavens, Rose!!! I am so so relieved that Jim is feeling well and prayers are going up right now for no side effects in any of his treatments and for the same results in tumour shrinkage that Jim had the first time around with Optivo. You are right to feel exhausted and so frustrated with the run around that you and Jim have had to put up with. It's terrible. In my experience, trying to get doctors to correct an oversight or mistake after they've moved on to other patients is one of the hardest things to do in medicine. I have gone knocking on the OR door when a surgeon forgot to write a script for pain meds after discussing and agreeing on it on the ward. I've left multiple, multiple messages when I know there's been a mistake in prescription. Out of sight, out of mind in the medical profession. And you have a triple whammy when Jim is frightened an confused. Well, today is a good day in your house and I'm so grateful for that. I'm also grateful that we got internet back after a long outage - we are still in Cat Island the service is very iffy at the best of times, but they had a fire in the main station that took days to repair, so I'm just catching up now. Sending much love to you all!!!!! xoxo Donna
    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


  2. The following 3 users say "thanks"


  3. #412
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    878

    Default

    Rose I'm so glad today went well! Praying it continues this way. You make me smile! I love hearing how you advocate for your loved ones. I envision a Dr. cowering in the corner. There are a few I'd like to see in that position LOL. On let me go days bleeding into my chest from a swallowed chicken bone. To the point of almost having a heart attack, I needed immediate emergency surgery to repair it and have a drain put in my chest. A little bit of an oversight wouldn't you say? Thank you for the updates and will keep the daily prayers coming. Keep it up tiger!!! LOL!

    Mary Grace

  4. The following 2 users say "thanks"


  5. #413
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,764
    Blog Entries
    1

    Thumbs up

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

    Donna ~

    Thank you for your prayers, and for stopping by here with your limited and elusive internet connection. Wish I was on Cat Island with you. I don't think I would mind being internet-free. You and I would probably never stop talking, and we wouldn't miss it!

    Isn't it awful that we have to track down physicians and force them to do what is their job? We have met more than a few inferior physicians, and our hospital is highly ranked. The majority of the physicians are excellent, but I have to be diligent to keep them on track. I always say to them, "You have hundreds of patients. I only have one." That usually wins them over.

    There is just no excuse for sloppiness, mistakes made, because there are too many patients, basing treatment on personal feelings of liking or disliking a patient, etc. Jim and I are astonished that oncologists, who literally are dealing with life and death with every single patient, are not on top of everything. If a cancer patient calls with a chemo/immuno reaction, that needs immediate attention. It can't wait for days, because you're too busy with other patients or don't like that patient.

    Dr. K or his assistant still have not called about Jim's Prednisone taper prescription. What if he was in horrid pain today and didn't have steroids on hand? I'm guessing that Dr. K figures that Jim has enough steroids (20) to do the wean on his own. But that is putting the responsibility on the patient. If Jim were as messed up as he was last year, he wouldn't feel well enough to keep a chart of his dosages. The taper script provides a card with the pills in bubbles, which makes it easier to keep track.

    Jim said today that it doesn't matter, since he does have steroids and isn't needing them, Thank You, Dear Lord! But, I said, "It does matter! This is a pattern of behavior, and if you need Dr. K, he'd better respond pronto."

    Anyway, Donna, when you sit out in the evening watching the sunset on Cat Island, have a glass of wine and think of me. I'm with you in spirit.

    Mary Grace ~

    Oh wow! A chicken bone, bleeding, heart attack, surgery ... that sounds like a malpractice suit! I'm so so sorry that you had to endure all of that, and I give thanks that you are all right and still with us.

    I've never had a doctor cowering in a corner. Their egos are far too large to be brought down by a woman, let alone a non-medical professional. But, I have stood my ground, and I've articulately sliced at their egos.

    Most memorable: Pediatric neuro, to whom all kids with neuro problems in the county were sent. He was about 5' tall, bald and round. He had a huge portrait of himself in his office with lighting on it.

    He gave every child the same protocol of drugs for seizures. He admitted to me that he was on the boards of these drug companies, and that was the day that I told him how the cow ate the cabbage. Loudly. I also swore at him, which I'm not proud of, but Michael was dying from these drugs, and this doctor didn't even look at him.

    The walls were paper thin separating his office from the hallway, which pretended to be a lobby/waiting room. When I rolled Michael out of this neuro's office, every Mom, who had been waiting for 2 or more hours (because that's what he did to us) to see this jerk, stood up and applauded me. They were all crying, and I said, "Ladies, let's get out of here and find another neurologist, before he kills all of our children."

    It was a convoy of wheelchairs and strollers, propelled by Mothers, who were overwhelmed and frightened, and we just needed the strength to fight for the best care for our children. And we agreed to tell every mom at our kids' schools, day care, after care programs, etc. not to go to this neuro, and what we'd been through with him. We didn't put him out of business, unfortunately, but we did put a big dent in it.

    Thank you so much for your prayers. How is Kathleen? Would love an update!

    ADDENDUM

    Jim has been fine today, a little ache here or there, but nothing untoward. He took 5 mg Prednisone this morning. A hot shower helped to loosen him up. He had a nap this afternoon. He's eating well. And he is so happy that he's not having any major side effects to Opdivo. I can't describe what a blessing this is for him, for us.

    Jim's infusion nurse told him that half of the cancer patients in the center are receiving Opdivo. HALF! So, what was the reluctance of Dr. P and Dr. K in giving Jim another shot at Opdivo? Especially since it reduced Jim's tumor by half. Both of them were pushing Taxol. Why?

    SERENDIPITY

    As Jim was waiting outside of the hospital for John to pick him up yesterday, he spotted Jon's wonderful GI doctor walking down the sidewalk. He called out to him, and Dr. C turned around, recognized Jim, and came over to chat with him. Dr. C remembered that the last time he saw Jim was last April, when Jim was recovering from the RA flare induced by Opdivo. Dr. C asked Jim how he was doing.

    Jim told him that he was taking Opdivo again! Dr. C was surprised, but he agreed that it was a good choice, if it can be managed with steroids. Then, he asked about Jon and me, and said he'd see us soon to replace Jon's G tube. They would have talked longer, but John arrived.

    If every physician could be a Dr. C, we'd have no complaints. This man is the Chief of GI at the hospital, and yet he makes a house call every year to change Jon's tube. He is so friendly, so kind, so compassionate, so loving. We are truly blessed that he cares for us and Jon.

    Thank you all for your continuing support, love, prayers, positive energy, and good thoughts for us.

    So far, we are winning!

    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.

  6. The following 3 users say "thanks"


  7. #414
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    994
    Blog Entries
    9

    Default

    Wonderful news, Rose! And boy, what a memory with that neuro. It was playing like a movie in my head. Academy Award for leading role in a drama goes to YOU!!! Fantastic. :) Yes, if you were here with my on Cat Island, we would talk all day and all night. Cry too, I bet. Next week I'm having lunch with my local friends down here who are disability Moms. They manage with their adult children who have autism somehow and they are both entrepreneurs. My friend Olive runs a bakery and a taxi business. Alnor has a bakery also. Olive's daughter Latiska rides in the taxi and smiles at the tourists. Alnor's son works in the bakery. Family helps out a lot when things get complicated with seizures or other issues, as things always do. Anyway, we are all a tribe and thank goodness for our supportive friendships. Love you!
    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


  8. The following 3 users say "thanks"


  9. #415
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,764
    Blog Entries
    1

    Thumbs up

    ((((((Donna)))))) ~

    There are scores of dramatic scenes like that in my life, and many times I have felt like I am in a movie! I'll bet that a lot of us feel that way. If I had the time and energy, I would work on my book, then turn it into a screenplay. And, if I ever won any kind of award, I would first thank Jon, Michael, and Jim, followed by all of the incredible parents of children with special needs, who I have met throughout my life. And then, my 6th grade teacher, Mrs. Ramsey, who told me that I should pursue a career in writing.

    I know you will have a wonderful day with Olive, Latiska, and Alnor. God bless them for their strength and courage, especially since they don't have access to all of the medical care that you and we do, regardless of how shabby it is sometimes. Please give them hugs from me, their tribal sister.

    Enjoy your island time, my friend. Love to you and Jim!

    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.

  10. The following 2 users say "thanks"


  11. #416
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,764
    Blog Entries
    1

    Thumbs up Better Late Than Never?

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

    Our pharmacy called today to tell us that Jim's Prednisone taper script has been filled. We never heard from Dr. K's office, so it's a good thing that our pharmacy has a policy of calling.

    Jim is taking 5 mg Prednisone (his maintenance dose), and he's managing okay. He does have a little stiffness, but once he moves around he's better. He helped me put away the groceries, delivered this afternoon, but bending over to put items in the freezer did a number on his lower back.

    He keeps begging me to let him help me, and I keep begging him to lay down and rest. He says repeatedly every day and evening, "You do everything. Let me help you!" I would rather that he rest and take it easy than overdo and then be incapacitated. I need Jim to be able to help me pull up Jon in the bed and turn him. That's all I need him to do. The rest is stuff I always do anyway.

    Jim is waking up around 1:30-2:00 in the morning, telling me to go to bed. If Jon isn't asleep, I stay up, because I know he's going to rip off his colostomy flange. Jim is too tired and confused at that time of the morning and hasn't had enough sleep, and he often has a headache. He has a pee, makes some tea and a sandwich, and I persuade him to go back to bed.

    Last night, he insisted, and I capitulated. Before I went to bed, I checked on Jon, and he was asleep and his colostomy flange was on the floor. I took the flange out to the living room, waving it in the air, and said, "Honey, this is why I stay up."

    Jon's supplies were also delivered today, and I am so pleased that I finally have a contact at the supplier. It only took 10 minutes on the phone with her to get the supplies ordered and delivery day established. That is the first time since October, when we started with this supplier, that it hasn't taken 40 minutes with 3 different people. So, I am very happy in this arena now.

    Thank you all for your prayers, love and continuing support. Our prayers are with all of you and your loved ones 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.

  12. The following 3 users say "thanks"


  13. #417
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,764
    Blog Entries
    1

    Smile Looking Good!

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

    Today, Jim met with Dr. K, who was very pleased that Jim has not had an RA flare after his Opdivo infusion. He was also quite happy with Jimís blood work results. Jimís rocking the WBCs and RBCs, and his hemoglobin and hematocrit are low, but improved from his draw last week and well in the safe range.

    His neutrophils (the WBC warriors) are in abundance!

    Jim mentioned that he seems to be coughing deeper and that he coughed up ďbrownishĒ gunk once the other day. Dr. K posited that these could be signs that Opdivo is stirring things up and helping to slough off the cancer.

    Until Monday, Jim was taking only 5 mg Prednisone/day. He began to experience some aching in his hips and knees and increased his daily dose to 10 mg. Dr. K is impressed that Jim doesnít need more.

    When Jim said that the headaches are continuing, Dr. K said that was not likely from the Opdivo, but from the radiation Ö still! Dr. K indicated that heís not a big fan of radiation, but ďif you need it, you have to have it.Ē

    Although Jim had an infusion scheduled for today, Dr. K cancelled it. The infusions are to be every 2 weeks, so Jimís infusion is next week on 3/21. Jim will see Dr. K on April 2.

    Jim will have 4 Opdivo infusions at 2 week intervals, then Dr. K will order a CT Scan to determine how well Opdivo is working. Of course last year, after only one infusion, his tumor was reduced by half. So, fingers crossed and prayers going up for the same or better results.

    Jim is coping with fatigue, possibly from Opdivo and definitely still from radiation. He finds it easier to nap in the afternoon or early evening than to sleep at night. At night, he gets a headache, itching in his ears, pain in his temples (radiation leftovers). He also coughs more. And the sounds he makes, when heís coughing Ö oh man! It sounds like his interiors are being expelled!

    He also struggles with his appetite. He doesnít feel hungry, and we have to go through a list of options until one strikes his fancy. Once he starts eating, he is able to finish all (if not most of his meal). He is maintaining his weight at 160-62.

    Jim said that Dr. K was very friendly, interested in his questions and told Jim that itís a great idea that he brings his list to help him remember. Dr. K looked over Jimís shoulder to read the questions to make sure that they were all answered to Jimís satisfaction, which they were. Dr. K listened and didnít cut Jim off like Dr. P used to do. He was reassuring, and he explained everything to Jim with kindness and a sense of humor. Jim is very satisfied with Dr. K now.

    Itís amazing how much stress we endured because of Dr. P, and the relief we feel now with Dr. K just emphasizes how bad it was. We have agreed that she will not be discussed with Dr. K, as they are colleagues, and itís water under the bridge. We have to move forward, and we are. I told Jim that I suspect that he isnít the only patient, who has left Dr. P for him or the other oncologists in the center. They probably all know her reputation, better than we do. So, tick a lock.

    We thank you all so much for your awesome prayers, healing thoughts, positive energy, support, and love and light. We know that you are a major factor in how well Jim is doing, and we canít find the words to express our gratitude.

    Please know that we pray for all of you too. Yes, all of you!

    May the good news just keep coming Ö

    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.

  14. The following 5 users say "thanks"


  15. #418
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,162

    Default

    Such good news, Rose.

    Go team!

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

  16. The following 3 users say "thanks"


  17. #419
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,764
    Blog Entries
    1

    Thumbs up

    ((((((ANN)))))) ~

    Thank you for cheering for us! Of course, you're a member of Team Jim!

    It's just so comforting at last to feel like we have a caring doctor, and we're over the moon that Jim isn't having a flare. He is still pulling up Jon and turning him, which has been such a great help, since we furloughed John during flu season.

    I believe that prayer works, and I also believe that CBD oil has been a factor in how well Jim is doing. It's the one thing that he is doing "outside of the box," which probably other cancer patients aren't.

    I think that everyone should take CBD oil!

    Hope you are safe during this storm. Sending prayers ~

    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.

  18. The following 4 users say "thanks"


  19. #420
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    3,162

    Default

    All is well here, Rose.
    There comes a time when silence is betrayal.- MLK

  20. The following 3 users say "thanks"


Page 42 of 66 FirstFirst ... 1232373839404142434445464752 ... 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.