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Thread: Jim's Journey

  1. #141
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    Thinking of you and Jim, Rose. Sending love and healing thoughts/energy/prayers over to you both. 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


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  3. #142
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    ((((((Hugs to All)))))) ~

    callyflower ~

    I did text Nancy and asked her to call me, which she did this afternoon, while I was taking care of Jim, so I missed her call. I returned her call later, got her voice mail, left a detailed message. She works all day tomorrow, so I know that she's jammed tonight setting up her patient's schedule. She knows what is happening, and that's the foundation upon which we will build Jim's care.

    PAIN MANAGEMENT

    Jim took Tylenol/Codeine this morning with his THC, and it takes about an hour for either of them to kick in. His pillows are arranged comfortably, and he has his heating pad on low on his left flank. He finds the heat comforts him the most. As long as he is prone, he is relatively comfortable.

    When he gets up to sit in the living room chair, he feels some pain but is okay after he's seated, and I've situated the pillows. As the day goes on, he feels less pain. He just returned from the bathroom, finally producing a good BM, and even did his crossword while waiting for the big event, without any discomfort.

    I don't know the panoply of narcotics available, but I think Fentanyl is top shelf, i.e., the strongest. I'd prefer to work our way up to that as needed, if other narcotics are sufficient to control his pain. Right now, he's pretty cheerful and joking around with me, so I know the pain is not overwhelming him.

    The script for the Tylenol/Codeine is 1 tablet every 6 hours. Jim has only taken one yesterday and one today. He asked me if it would be okay to take just 2 regular strength Tylenol after 6 hours, without the codeine. I said I thought it would be, since the Codeine tablet has more Tylenol than two regular strength ones.

    Jim is drowsy, but he's carried on conversations with me, watched for the water delivery truck until 3 p.m. when he finally showed up, so I could open the garage to have the cases brought in, watched Man U vs Arsenal soccer, golf, now football, ate a good breakfast and lunch. Vitals are all excellent.

    So, we will approach this as things change for him. If 2 Tylenol isn't enough plus one Tylenol/Codeine per day, then we'll go with 2 Tylenol/Codeine per day. And so on, until Dr. K gives us pain management suggestions or refers Jim to a pain management physician, or Nancy offers suggestions based on her extensive experience in hospice and palliative care. I am listening and learning.

    RADIATION

    Could you please expand upon this and explain how this could be easier than the last staging? We are novices and know nothing. Thank you so much.

    Since the precise stereotactic radiation is now off the table, the simulation and planning may go a lot easier, and the treatments would for sure be faster each day.
    VEHICLES

    Jim loves to go through Consumer Reports annual car issue, every year for 27 years now. He also used to watch videos on TV about new cars/models with reviews on their reliability and performance.

    He told me today that he has chosen several models meeting our needs criteria, including access. He also said that John's wife's car would be a good fit for us. We even discussed that with John the last time he took us for Jim's scan. He agreed that it would be a good car for us.

    Jim doesn't want to lease, believing it to be more costly than buying a car. He wants to buy a new car, this year's models are going on sale to make room for next year's models. His primary reason is that he doesn't want me to have any automotive problems with a used car.

    So, we are looking for a car, which is small but not too small, with room for Jim's long legs, easy access in and out, storage room in the back, and easy to operate. I don't need the stress of learning computer ge-gaws with a new car. It will be difficult enough for me to adjust from driving a truck (our van) for 20 years to driving a compact car. And I know that Jim will be giving me Driver's Ed instruction on top of that.

    How we're going to manage doing that in the midst of everything else, I can't even fathom right now. I will have to leave Jim to look at the car, to negotiate the deal, to finance it, etc. I can't leave him now.

    There are far too many things, which need immediate attention. John is willing, as he texted me this morning to ask if Jim had any appointments this week. He wants to be there every step of the way for us, and we never have to ask. He says, "Give me dates," and he puts them into his iPad calendar.

    Honestly, I need John's presence and help as Jim's health declines. He knows this, and that is why he is on top of everything right now. He texted me later in the morning to remind me that if we need anything, he will pick it up and bring it to us. So, we'll be leaning on John, because he clearly has shown us that he's available to us no matter what.

    THE FUTURE

    I can envision the future, where Jim is in Jon's bed in Jon's bedroom. And I am drifting off to sleep for 30 minutes on Jon's chairbed. You all know the rest ...

    Jeanie ~

    I thank you so much for helping Jim, and I give thanks that LDN has worked so well for you. However, callyflower's observation about LDN affecting opioid efficacy is concerning, because I suspect that Jim is on the road to continual narcotics now. He is resisting it, in his own very brave way, because he doesn't want to become addicted to anything. I'm concerned that the narcotics and LDN will be contraindicated, and right now, we need to treat his pain. Thank you for your prayers.

    Donna ~

    Thank you for keeping us in your prayers and sending us healing energy.

    Everyday, we put one foot in front of the other, praying that we are on the right path. Whatever happens next, we ask for strength to endure it. We know that there is peace at the end of the trail.

    Thank you all for your love, prayers, comfort, encouragement, knowledge, experience, guidance, and friendship.

    You and your loved ones are in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  5. #143
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    I was told what callyflower mentioned that you can't let the pain get ahead of you. You have to give the pain and fever meds ahead of time in order to keep the pain and fever at bay. I was getting up at 3:30 AM to try to get them in him because it took a very long time to get them down. By this time, my husband was worse than Jim is at this point, but it is something to keep in mind in case you ever need to know. The Doctors didn't inform me of any of this and I didn't know. A nurse from Hospice told me how to manage many things, and you have Nancy.


    I am going to ask a very dumb question and there is no need to answer it, but I had wondered if Opdivo is totally off the table now, and maybe he can't take any more. I was thinking if he could have it one more time along with steroids for the RA, that is the one thing that slowed the tumor growth. I feel sure if it could have been done you would have brought it up.
    Virginia

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  7. #144
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    Rose, what Jim was doing earlier was precise, tumor targeted, extended radiation. 25 minutes per treatment is a long time. Radiation to address the “tumor bed” in general is less targeted, and gives a blast to the tumor and it’s resting spot all at once, and for just a few minutes. The cage may not be necessary, although some type of position and stillness would. Of course a radiation oncologist is the best source for specific info.

    Fentanyl is top shelf, but is wonderful for providing continuous relief without the horrible sedation you get with other stuff, including codeine... when used correctly. My mom would get drunk on communion wine, but with the smallest patch she just got relief, was able to sleep and wake pain free and could do everything short of driving her car, which was a big no for other reasons. I was given Fentanyl after my breast surgeries and was alert immediately and never felt loopy. The media sensationalizes the abuse stories, not sound medical treatment. Any drug, including and especially stuff like Tylenol, can be dangerous when used improperly. It is important to consider all pain control options given by your doc as pain control is so important for quality of life.

    Getting a car is easy. The last two I got were from online purchases. The one I have now was online followed by a phone call and two days later a truck delivered it, we signed on the dotted line, and it was ours. I have a Toyota RAV 4 and my mom found it so easy to slide in (she was 5’9”. Most dealers have online shopping options and it is the only way I will buy now. I don’t care about the engine. It’s all about features that suit me. I would suggest getting faux leather seats for ease of transferring and cleaning. I have them and love them. They ain’t yo’ mama’s vinyl seats!

    Hugs,

    C
    Last edited by callyflower; 10-01-2019 at 05:54 AM.

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  9. #145
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    :) Rose I have taken 25 mg Fentanyl patches with LDN. Those warnings are for the big doses of naltrexone. I also took pain meds when I first went to rehab. No side effects ever with LDN.

    I wish you good luck finding a car. I drove my son's car one day and it felt funny being so low down after my van. I continue to use the witch hazel on my arthritis. Jeanie :)

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  11. #146
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    That’s good to know, Jeanie. It never really made sense that the tiny dose of naltrexone could block a dose of opioids. Glad to know you put it into practice!

    C

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  13. #147
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    Default Radiation Oncologist Appointment Tomorrow 10/2

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

    Virginia ~

    Thank you for sharing your experience with managing your husband's pain. Jim and I discussed this today, and he agreed that he shouldn't wait until the pain is out of control, before taking something.

    Jim and I are used to managing our pain without pharmaceuticals, but this is different now, of course. All of the doctors and nurses treating him were stunned, when they learned that he wasn't taking any medications at all. Most Seniors take something, like a BP med, or insulin, a heart med.

    Unfortunately, Opdivo and all chemo drugs are off of the table now. Dr. K doesn't know whether Jim's low WBC is a result of too much Opdivo, or something else. He said he's given Opdivo to many patients, some over a long period, and none of them have had a drastic drop in their WBC. He says that is a risk with Opdivo, but he's just never seen it. Maybe I should suggest that Dr. K write a scholarly article about Jim.

    To receive chemo or Opdivo, Jim has to have a WBC above 1.0, which he typically had. It did go up about 2 months ago to 2.2 and stayed there for a month. But it, along with his RBC, hemoglobin and hematocrit dropped significantly.

    I read your post on Chit Chat, and I'm so sorry that you are feeling horrible after your flu shot and Rebif. It's usually a good idea to have flu, shingles, pneumonia vaccines, when you aren't taking another shot. I'm praying you feel better very soon.

    callyflower ~

    Thank you so much for explaining the differences between the previous and the upcoming radiation treatments. It makes sense to us. It is also reassuring that Jim won't be on the table for long, and maybe won't have to have the "cage" to hold him down.

    Appointment with Radiation Oncologist

    I called yesterday, and the first opening was 10/16. When I was asked if this was an urgent referral, I replied, "Well, he's in a lot of pain, and we don't want it to get worse." She said that she would check to see whether he could be worked in sooner.

    She called today, and we're scheduled for tomorrow at 2 p.m. I texted John, and he will transport us.

    We are meeting with a doctor, who only started with our medical group yesterday. On Friday, Dr. K referred us to Dr. L. Yesterday, I was told that Dr. L was no longer with the practice. Jim will see Dr. C. I don't know whether Dr. C is male or female. Same thing happened in March/April, when Jim saw Dr. F, and that day, he actually left the practice. Revolving door in this department, and it doesn't make me feel secure.

    I asked Jim whether he felt up to going tomorrow, and he said he did. He feels better today, with much less pain than he had Saturday, Sunday, and yesterday. He took 2 Tylenol at bedtime last night and slept for 6 hours. So, he had 1 Tylenol/Codeine, and 4 regular strength Tylenol for the day.

    He decided to take 2 Tylenol instead of the one with codeine this morning. I asked if he thought that would be enough, and he said he wanted to find out. He describes it as an aching rather than searing pain as before. The pain is much less when he is laying on his bed, with the heating pad on the area. He can tolerate sitting in the living room chair to eat, with proper pillow support behind him.

    Jim said, "I made up my mind. I want the radiation. I know it will be painful, but if it works, that should relieve the pain, at least a little. It's pain or dead. I'm willing to do this, because I don't want the alternative right now. We'll see what Dr. C says tomorrow and whether it's likely to benefit me, and then we'll decide from there."

    On Line Car Sales

    Thank you for sharing that information too! I did a search today and found a Toyota dealer with all the information on its site about Express Service. The RAV4 is a little out of our price range, so I looked at Corollas.

    I had a 1980 Corolla, stick shift, no a/c, but it did have an FM radio, and I used to put one w/c in the trunk with a bungee cord, and the other w/c across the backseat floor, in front of Michael. Not safe, of course. Not easy either.

    Then I looked at Honda dealerships. The two I checked didn't have a link to Express Service, so I used their on line chat box. Both sales people asked for my name and phone number. One said she wasn't sure whether they had it or not. Goodbye Felicia!

    I will keep searching, as this is the ideal solution for us! I can't thank you enough!

    Jeanie ~

    Thank you for sharing about Fentanyl patches and LDN. I still have to discuss this with Dr. K.

    I'm worried about your leg pain, dear. If it doesn't improve, maybe you should call your physician? I'm very happy that Witch Hazel is helping your arthritis. Keep applying it to the sore area of your leg too. It reduces inflammation.

    Thank you all for your continuing love, prayers, support, and friendship. We pray for you and your loved ones daily.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  15. #148
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    My mom had a Corolla and loved it. I drove it until someone rear ended me and destroyed it. At least that made the decision of whether or not to sell it.

    I had a 4 speed Corolla that I bought in 1987. I drove it for over 200,000 without a single engine repair. I’ve had my RAV since 2013, with a Honda in between. I keep cars a long time.

    I hope you get nothing but encouraging news tomorrow.

    C

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  17. #149
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    ((((((callyflower)))))) ~

    Thank you so much.

    My Corolla had a severe oil leak thanks to a lousy lube/tune shop. I needed a new engine. But she served me well for many years. And my cousin's husband bought her from me, fixed her all up and sold her for a bit of extra cash. That was after we were gifted with a Chevy van, with a wheelchair lift.

    Now, because humor is healing, I have to share this video of Kevin Bacon and Jimmy Fallon doing a parody of "Lola." It has two meanings to us now, the first being that Jim drove the equipment semi for the Kinks European tour. You'll figure out the second after you watch it:

    https://www.youtube.com/watch?v=mzclqZCu9n0

    Jim has many interesting stories.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  19. #150
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    dear rose....,

    THE FUTURE
    I can envision the future, where Jim is in Jon's bed in Jon's bedroom. And I am drifting off to sleep for 30 minutes on Jon's chairbed. You all know the rest ...
    we can't control death, but we can control how we live.

    it's a beautiful day. jim is in jon's bed. he knows he is going to see his beloved michael and jon soon. he hears the fountain gurgling somewhere in the distance, the cries of the hawks. his wife, friend, caregiver and soulmate is peacefully taking a quick nap. he gazes at you and thinks of all the love you've all shared. his life was complete the day he met you and then your sons. he knows you will be sad, but he can't hold on. he closes his eyes and lets this life go, knowing he will see you again.

    what a peaceful ending, perhaps some of the same things jon thought of before he let go.

    before my mom died, she was on fentanyl patches and morphine for breakthrough pain. there shouldn't be any worries about addiction. she had several good days where she smiled and was calm. her speech was still gibberish, but she wasn't in any pain. the nurse called me one night, saying mom had become non-responsive. i said i would be there as soon as i could. the nurse said to get some sleep, mom would make it through the night. i got to the nursing home 11 the next morning. i talked to my mom. laughed at things in the past. told her i would stay with her. my brother came about 1pm. my mom died at 3pm. i was sitting next to her. my brother left, overcome. i stayed for the police and hospice coordinator. then i walked with my mom out the door of that hellish place with the funeral home rep and a good friend. she wasn't alone and that was the most important thing to me.

    i wish much more love and peace for you and jim...
    jeannie
    Last edited by tic chick; 10-01-2019 at 07:25 PM.
    WE ARE BT!
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