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Thread: Jim's Update

  1. #301
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    Rose, I know I haven't posted in a while but I have been checking in and reading your updates. My kids bought me a new MacBook for Christmas so I've been logged out of things and just getting my passwords back in so I can respond. My first thoughts about Jim's appointments is to just give the Dr. a choice either we can record the visit or FaceTime/skype the appointment your choice but you NEED to be included. This doesn't give her the option to say no. Even in a perfect mindset it's nearly impossible to relay all that it said by dr.s at an appointment. This is not a "want" it's a "need" a word I've learned with Kathleen language is everything. Needs are not up for negotiation. That said you and your family are always in my thoughts and prayers. Thank you for sharing this journey.
    Mary Grace


  2. #302
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    Agree! Great advice on language, Mary Grace. Happy New Year to you and Kathleen!
    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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  4. #303
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    My dear Rose, I am so glad that Jim is feeling a bit better. And I hope that he can get a 2nd opinion very quickly (what does that mean anyway in today's system?). I'm disappointed that he feels the need to apologize to Dr. D., but of course that is completely his prerogative. And he must do what he feels is right for his own peace of mind, that is so important. I worry about you not getting enough sleep. But of course this is your normal and it's been like this for years. How can you keep going? I don't know, but the love you have for your family is the gas in your engine, that's for sure. I send you love and all my positive energy for a GOOD SUNDAY today. 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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  6. #304
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    ((((((Hugs to All)))))) ~

    Callyflower ~

    Congratulations on your bike riding! That's fantastic! It must feel great and liberating to be able to ride your bike with your daughter. I'm happy for you.

    Yes, I will have to put the hammer down on Jim's bike riding. I'll find a way. And perhaps I can persuade John to see my point of view as well, and maybe just not be "available" to get Jim's bike down from the garage wall. For one thing, our garage is so full of boxes that access to the bike is obstructed. So there's that to add to the mix. I think Jim will accept my reasons and cautions about riding his bike, and if he doesn't, then I'll just play the "this will stress me out even more if you do this, so please don't."

    Seething ~ great word and exactly how I am feeling.

    Mary Grace ~

    So good to see you here again! I hope you're enjoying your MacBook. I'm glad you were able to get back into BT/CN!

    Your suggestion is excellent. However, I'm not sure it would work with Dr. P. She will say that she doesn't have time to set up a FaceTime/Skype contact. Jim says she just flits in and out of the room, going from one patient to the next, and she rarely remembers what's been going on with Jim, when she's with him. She is simply not personally interested in him. I don't think she cares what he needs, and she sure doesn't care what I need.

    I don't know what we'd use for recording his appointments, as our cell phone is an antique and doesn't have that feature. John could probably guide us on the right device to accomplish this. Then Jim has to learn and REMEMBER how to use it. He often has trouble with our cell and our land line. So, I'm not hopeful in that regard.

    Donna ~

    Jim was plagued with a pounding headache this morning, took Tylenol, but some headache remained. He took 10 mg Prednisone, and the headache abated finally. His rads rash is greatly improved and less itchy.

    He's eating much better too now. This morning, he said he wanted a couple of scrambled eggs. While he rested, I made him an omelette filled with peppers, onions and mushroom, a touch of shredded cheddar, and some cottage fries, veggie sausage, avocado and grape tomatoes. He was surprised when he sat down and told me it looked lovely, as I always try to present the food in a colorful and appealing way. He vacuumed it up!

    The purpose of the 2nd opinion is to test drive Dr. PK to see whether he is more compassionate and responsive to Jim and me. We also want a fresh pair of eyes on Jim's treatment options. Dr. PK is young and likely hasn't had a chance to burn out like Dr. P, who is in her early 60s.

    If Jim likes and feels comfortable with Dr. PK, he will fire Dr. P and hire Dr. PK. Thus far on his journey, Jim has found that the Asian male physicians have been the most caring and thorough. And they have all been very willing to talk to me as Jim's wife and caregiver. So, I have a feeling that Dr. PK will be a better fit for Jim.

    Sleep has been a bit of a problem for me recently, as I can't seem to sleep past 6 a.m. or longer than 3 hours. When I wake up, my mind turns on, and I can't turn it off. I am fending off fear and depression and even a bit of "Really, God?" feelings. I'm on the verge of throwing a pity party, and that's just not my style.

    I continue to strive to live in the NOW, but I am constantly straying out of the NOW to "What If Land." What if this happens or that happens? And the "What Am I Going To Do When Land." I have to be prepared for so many things, and it is overwhelming.

    It doesn't help that our home is unfinished and falling apart. I believe that our home is ourselves, and when it's in disarray, we are in disarray. That's why we always feel better and good about ourselves after we've cleaned, organized, moved furniture, etc. Well, I've been doing A LOT of that recently. And now I'm still looking at Christmas decorations in Mid-January. But I did make a "hole" on the laundry table in the garage, and Jim and I did the happy dance, since it's been eons since there was a hole there.

    With a goal of resolving some of Jim's body pain, I ordered an organic all cotton mattress topper. Queen size. Jim has had to help me get that thing in and out of the washer and dryer! It's very well made, and I will probably order one for our bedroom, where I sleep. Or try to sleep. I also ordered a new blanket for Jim, because he has been using an ancient blanket, which belonged to my Mom. It is shredding and pilling, and I am sweeping the floors every day. Between the contents of Jon's underpad (which he shreds when he puts his hand under his hip for comfort) and Jim's blanket, I am constantly cleaning floors.

    Oh dear ... I am blathering ...

    Thank you to all for your willingness to read my missives, and for your love, prayers, and support.

    We love you!

    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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  8. #305
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    No problem Rose. I can see your concern with the bike. You need something to keep him exercising and mentally engaging so please try to find something you are both comfortable with him doing. In regards to recording I used a device similar to these https://www.bhphotovideo.com/c/buy/H...5/N/4035153667 They are very easy to use. All Jim has to do is press the red button and a light will come on indicating that it is recording. Then when Dr P is finished he just hits a stop button. It is very small so it won't get in the way or require set up. Jim will likely need to sign a form to record the visits with this because of privacy laws.
    Last edited by funnylegs4; 01-14-2018 at 04:22 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  10. #306
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    We got Jim a walking stick, per his request, with a seat on it, so that he could walk around our neighborhood. In 3 minutes (for him), he can walk to my favorite place in the neighborhood, sit on a bench and enjoy these views:

    Screen Shot 2018-01-14 at 6.42.18 PM.jpg

    Screen Shot 2018-01-14 at 6.42.48 PM.jpg

    There are ducks, egrets, cranes, and other birds in/near the lakes. Squirrels, jackrabbits on the green belt, and friendly neighbors passing with their dogs, available for petting. (I met a sweet chihuahua today.) It is peaceful and calming. He loves it, but he thinks he'd enjoy riding a bike more, and he doesn't realize that riding a bike will be strenuous and cause him to lose his breath more than walking.

    I still haven't bought him a sombrero and he probably shouldn't be out in the sun anyway for awhile. And not without sunscreen for sure.

    A dear friend sent Jim a Qigong video to reduce stress. So, Jim and I need to do this together. I think that might help us. I will have to initiate it, because Jim tends to procrastinate.

    Thank you for the information on the recording devices. I will ask John to pick up something for us, as his job takes him to Walmarts in our area. He visited today to turn Jon, and I forgot to mention it.

    I finally finished washing and drying Jim's new mattress topper and his topper mattress pad, plus his new blanket. Took me 3 days, as these are very bulky and take forever to dry. We made Jim's bed this evening, and it's super comfy. I am hoping that Jim will sleep better, and that his back pain will resolve. I've decided that I will buy a mattress topper for our bedroom, where I sleep, because I need the same kind of comfort and support.

    Tomorrow's the Big Meeting with Dr. P. I should probably prepare something for Jim to take with him, so that he covers all of the points. I know he'll get flustered and forget.

    Thank you all for your love, prayers 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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  12. #307
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    We got Jim a walking stick, per his request, with a seat on it, so that he could walk around our neighborhood. In 3 minutes (for him), he can walk to my favorite place in the neighborhood, sit on a bench and enjoy these views:

    Screen Shot 2018-01-14 at 6.42.18 PM.jpg

    Screen Shot 2018-01-14 at 6.42.48 PM.jpg

    There are ducks, egrets, cranes, and other birds in/near the lakes. Squirrels, jackrabbits on the green belt, and friendly neighbors passing with their dogs, available for petting. (I met a sweet chihuahua today.) It is peaceful and calming. He loves it, but he thinks he'd enjoy riding a bike more, and he doesn't realize that riding a bike will be strenuous and cause him to lose his breath more than walking.

    I still haven't bought him a sombrero and he probably shouldn't be out in the sun anyway for awhile. And not without sunscreen for sure.

    A dear friend sent Jim a Qigong video to reduce stress. So, Jim and I need to do this together. I think that might help us. I will have to initiate it, because Jim tends to procrastinate.

    Thank you for the information on the recording devices. I will ask John to pick up something for us, as his job takes him to Walmarts in our area. He visited today to turn Jon, and I forgot to mention it.

    I finally finished washing and drying Jim's new mattress topper and his topper mattress pad, plus his new blanket. Took me 3 days, as these are very bulky and take forever to dry. We made Jim's bed this evening, and it's super comfy. I am hoping that Jim will sleep better, and that his back pain will resolve. I've decided that I will buy a mattress topper for our bedroom, where I sleep, because I need the same kind of comfort and support.

    Tomorrow's the Big Meeting with Dr. P. I should probably prepare something for Jim to take with him, so that he covers all of the points. I know he'll get flustered and forget.

    Thank you all for your love, prayers and support.

    Love & Light,



    Rose
    You're very welcome! Oh those pictures are gorgeous! You are so lucky to live there! Yeah Jim probably thinks its easier since he's sitting. Prayers for tomorrow. Please let us know how it goes?
    Last edited by funnylegs4; 01-14-2018 at 09:35 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  14. #308
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    Rose thank for the pictures! What beautiful scenery. I wish I could join you on that walk. It's so bitter cold here. Been below zero for a long time except for one day that was 60. Crazy crazy weather. The walking stick is a great idea. Praying that the next appointment brings some good news and answers all your questions. Thank you for all your updates.
    Mary Grace

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  16. #309
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    ((((((Hugs to All)))))) ~

    THE STORY OF OUR HOME

    We are very blessed to have our home in this beautiful planned community. We bought our home 40 years ago, as my condition of reconciliation with my then spouse. Two years after we moved in, I divorced him. In 1996, the deed was put in my name after a long legal battle with my ex. It was a challenge for me to maintain our home and afford improvements. Jim has done so much work through the years on our home, which saved us a ton of money. Our community is in demand for buyers, because of its unique features and location. We could never afford to buy our home now! So, Iím truly grateful every day that I forced the issue 40 years ago. And, that I was able through hard work and many difficult times to maintain it.

    JIMíS VISIT WITH DR. P TODAY

    Dr. P was a different person today. She hugged Jim and wished him a Happy New Year. He replied, ďI hope so!Ē

    When he opened the pages of notes Iíd made for him, so he could remember everything he wanted to tell her, she said, ďOh, we donít need that today. We are going to start fresh!Ē

    She listened as he described his radiation side effects and told him that it was all expected and that it would gradually lessen. She seemed sorry that heís been so miserable. She said that the blood he coughed up was not concerning, since it was a one time thing.

    Iím dumbfounded that they donít use a pulse ox for vitals! Everything else but that. A lung cancer patient, in particular, should have SATS checked regularly. Jim told Dr. P that his daily SATS range from 95-97, and she was astounded. ďThatís fantastic!Ē

    She told Jim that she wanted to fatten him up, as she could tell heíd lost weight. Heís lost 5 pounds, which isnít that much really, and is in his normal range prior to cancer. He explained that the rad nausea and fatigue interfered with him eating as well as he would like to eat.

    She said she didnít want to start chemo again, until after the radiation wait period concluded. She ordered a brain MRI and a chest CAT scan. For the same day! I said, ďNOPE!Ē He has to have contrasts with both of them, and thatís just too much in one day. So MRI is on 1/29 and CAT scan is on Feb. 1.

    He then sees Dr. P on Feb. 5, and sheíll have the test results and will decide where to go from there.

    Dr. P examined Jim, and she hugged him goodbye, and told him to rest, assuring him that in February, she will have a plan to go forward.

    Jim said that he doesnít want to pursue the 2nd opinion from Dr. PK, until after he has his test results and finds out what Dr. Pís plans are. I think that makes sense, especially with the test results as a road map.

    While chatting with the nurse, who drew his blood through his port today, Jim mentioned that he was thinking about a second opinion, and that he canít believe how difficult it is to obtain one. She responded, ďI know. Itís disgusting! This is your LIFE! And you have a right to know whatís happening to you and whether another doctor has a better plan.Ē

    The nurse also revealed that Dr. D is known for having a poor bedside manner. She told Jim not to take it personally, because sheís like that with all of her patients. Well, maybe sheís in the wrong profession then!

    Jim didnít sleep well last night, despite his comfy new mattress topper, because he was stressed about todayís appointment. Shortly after he came home, he said that he was aching all over. Thatís the stress. Heíd already taken his usual 5 mg steroid this morning, so I gave him 15 mg more, along with his 10/10 CBD/THC capsule. He managed to eat some vegetable soup and water crackers, then climbed in bed and is attempting to sleep.

    At the doctorís office his BP was 155/84. Before he settled into his nest, I took his BP. It was 122/68. Hello Stress!

    So, he has 2 weeks with no doctor appointments, and the goal is to get plenty of rest and gain back the 5 pounds.

    Thank you all so very much for your continuing love, prayers, support, and positive healing energy. We keep you in our prayers daily.

    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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  18. #310

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    Rose, it sounds as if Jim had a better day...today. My takeaway involves this:

    "While chatting with the nurse, who drew his blood through his port today, Jim mentioned that he was thinking about a second opinion, and that he can’t believe how difficult it is to obtain one. She responded, “I know. It’s disgusting! This is your LIFE! And you have a right to know what’s happening to you and whether another doctor has a better plan.”

    I see that as a big hint to DO the second opinion. Nurses don't say stuff like that unless there is a reason. If you wait until after Feb 5, your wait will be longer. Consider setting up a second opinion, and you can always cancel it later. Just my opinion.

    C
    Last edited by callyflower; 01-15-2018 at 04:48 PM.

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