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Thread: Jim's Update

  1. #311
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((callyflower)))))) ~

    I've thought the same thing, and it's likely I will pursue it. I want to chat with Jon's nurse to find out what she knows about the 2nd opinion process. I don't think it would be meaningful for Jim to see Dr. PK for a 2nd opinion, until the test results are in, because the decisions about what to do next are dependent upon the results. What if the radiation didn't work? What if cancer has spread more throughout his lungs?

    I think any doctor would want to wait for those test results, before giving an opinion. It's always been that way with every medical issue my boys have had.

    Today is not the day to discuss this with Jim, so I'll wait until a better time, when he's feeling a bit stronger, to review it with him.

    Thank you so much for your thoughts, suggestions, and sharing your experiences with me. You are truly helping me.

    Meanwhile, Jim's out like a like and snug as a bug in a rug.

    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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  3. #312
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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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, I’m 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.

    JIM’S VISIT WITH DR. P TODAY

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

    When he opened the pages of notes I’d made for him, so he could remember everything he wanted to tell her, she said, “Oh, we don’t need that today. We are going to start fresh!”

    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 he’s been so miserable. She said that the blood he coughed up was not concerning, since it was a one time thing.

    I’m dumbfounded that they don’t 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. “That’s fantastic!”

    She told Jim that she wanted to fatten him up, as she could tell he’d lost weight. He’s lost 5 pounds, which isn’t 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 didn’t 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, “NOPE!” He has to have contrasts with both of them, and that’s 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 she’ll 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 doesn’t want to pursue the 2nd opinion from Dr. PK, until after he has his test results and finds out what Dr. P’s 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 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.”

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

    Jim didn’t sleep well last night, despite his comfy new mattress topper, because he was stressed about today’s appointment. Shortly after he came home, he said that he was aching all over. That’s the stress. He’d 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 doctor’s 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
    Lovely house story! My theory is that Dr P found out "through the grape vine" that Jim may want to get a 2nd opinion and realized she had to kick her bad attitude to the curb so you may want to get the 2nd opinion just to hold Dr P to the fire. As for Dr D. I had a doc like that. He was a very skilled doc but his bedside manner was disgusting and years later when the internet was more of a thing I found out he was known for being a jerk and an ableist in his reviews. Glad it went well. Prayers as always!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  5. #313

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    Yes, Rose, the appointment would be best after the scans are done, but if you wait until then to pursue it, you may have weeks and weeks to wait to actually see the new doc. If you set it up now, as a "second opinion records review" and schedule it for right after the scans are done, you will have that spot sealed and if you decide, for whatever reason, you don't need it, you simply call and cancel it. Maybe get an afternoon spot so you can go with Jim. He needs support and you know best how to provide it.

    Cancer is tricky. It's important to try and stay one step ahead of it. Jim is at the point where things can happen very quickly. I KNOW he's sick to death of appointments, of feeling ill, of dealing with people he never in a million years wanted to deal with. He ultimately is the decision maker as it's his body, so the encouragement you give him to pursue other options, etc, is very important. Whatever happens in the future, it would be nice for all of you to be at peace, knowing you explored ALL options and made decisions based on that, with no regrets.

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  7. #314
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    Thumbs up

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

    funnylegs4 ~

    Thank you so much for your prayers.

    I wondered the same thing, as did Jim. That's fine if she did hear it through the grapevine, because she needed a heads up that things are not well with Jim and her previous approach and attitude. She changed her tune, and that helped Jim and made him feel better, so however that happened, it's still a good thing.

    callyflower ~

    How well I know how long the System takes in these kinds of matters, now that I realize that the protocol here is to have another doctor make a referral for a 2nd opinion. Before I request the referral for Jim, I'd like to know what the process is, so I'm planning to speak to Jon's nurse. I may also contact our PCP to discuss it with him. I'm thinking he might be our best bet for a referral.

    Jim felt so much better today, rested and free from pain. He was in a jovial mood, and we laughed so much today. Given the tears I spilled last night, the laughter gives my spirit balance.

    Jim's blood work results were posted on his health portal. Everything looks very good. WBC is normal. While still in the low range, his RBC, hemoglobin, and hematocrit are better than his last draw at the end of November, before his final Gemcitabine infusion. His neutrophils (the white warrior blood cells) are normal and better than they have been for months.

    We cling to the positives and to hope.

    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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  9. #315
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    ((((((Hugs to All)))))) ~

    Yesterday morning, Jim heard a delivery at our front door. When he opened the door, he found a large box, looked at me and asked, “Is this for me?”

    I feigned ignorance poorly. “Mmm…maybe…what do you think it is?”

    “A guitar?”

    “A guitar?! Really?!” I paused. “Well, Happy 70th Birthday, Honey!”

    Jim thanked me profusely and is clearly delighted with his gift. We waited until Jon woke up, so Jim could open it in front of Jon. Jon was surprised and
    thrilled! Jon strummed a little on the guitar and loved it.

    I ordered the 2 DVD+booklet from “How To Learn to Play the Guitar in One Day,” by a local guitarist from Orange County. She is the woman he was watching on
    PBS, which gave me the idea to give him a guitar for his birthday. That should be delivered early next week.

    What Jim doesn’t know is that I also ordered him a guitar, with a DVD, and other accessories from Keith Urban! That will arrive on Tuesday. As surprised as he was with the guitar yesterday, he will be 10 times more surprised with the second one!

    I have asked all of our friends to send him a birthday card with a memory of a time from the past, or something about what they like or admire about him, or some encouraging words for the rest of his cancer journey. If they have photos of them with him/us from the past, I've asked them to include their favorite one.

    I will make a memory book with all of the cards and photos taken yesterday and on his birthday. A keepsake for him. And eventually, I guess, for me.

    I'd love to throw Jim a big surprise party, but that is absolutely impossible. For example, Jon was awake until 10:30 this morning, about 20 hours. I stayed up with him until 6:45, when Jim woke up and took over. I slept on and off until about 10:30. It's after 6:00 and Jon is still asleep. Jim slept for a good portion of the afternoon.

    Can you visualize a party scenario on a day like this? And every day is like this or has some other challenge to a "normal type" of life for us. I do not have the energy to throw a party! Nor could I even imagine scheduling it, when every single day is unpredictable.

    Beyond that, we have no where for people to sit. Our bedroom is Jim's room now, with a queen sized futon in it. The coffee table is a medicine chest, magazine shelf, etc. All of the things Jim needs at his disposal.

    Our back yard is dirt (our lawn died during the drought), and our patio furniture is falling apart. There was a time, when our lawn was lush, all of our plants and flowers were blooming and healthy, and it was beautiful and serene with Michael's waterfall garden. Now, it is depressing and barren, with no color, because we haven't had the time/energy to tend to it. Our plan is to put in concrete throughout. Again, when will I be able to schedule that major project?

    We can only do what we can do. So, I try very hard not to think about the things that we can't do.

    Thank you all for your continuing friendship on our journey.

    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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  11. #316
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Yesterday morning, Jim heard a delivery at our front door. When he opened the door, he found a large box, looked at me and asked, “Is this for me?”

    I feigned ignorance poorly. “Mmm…maybe…what do you think it is?”

    “A guitar?”

    “A guitar?! Really?!” I paused. “Well, Happy 70th Birthday, Honey!”

    Jim thanked me profusely and is clearly delighted with his gift. We waited until Jon woke up, so Jim could open it in front of Jon. Jon was surprised and
    thrilled! Jon strummed a little on the guitar and loved it.

    I ordered the 2 DVD+booklet from “How To Learn to Play the Guitar in One Day,” by a local guitarist from Orange County. She is the woman he was watching on
    PBS, which gave me the idea to give him a guitar for his birthday. That should be delivered early next week.

    What Jim doesn’t know is that I also ordered him a guitar, with a DVD, and other accessories from Keith Urban! That will arrive on Tuesday. As surprised as he was with the guitar yesterday, he will be 10 times more surprised with the second one!

    I have asked all of our friends to send him a birthday card with a memory of a time from the past, or something about what they like or admire about him, or some encouraging words for the rest of his cancer journey. If they have photos of them with him/us from the past, I've asked them to include their favorite one.

    I will make a memory book with all of the cards and photos taken yesterday and on his birthday. A keepsake for him. And eventually, I guess, for me.

    I'd love to throw Jim a big surprise party, but that is absolutely impossible. For example, Jon was awake until 10:30 this morning, about 20 hours. I stayed up with him until 6:45, when Jim woke up and took over. I slept on and off until about 10:30. It's after 6:00 and Jon is still asleep. Jim slept for a good portion of the afternoon.

    Can you visualize a party scenario on a day like this? And every day is like this or has some other challenge to a "normal type" of life for us. I do not have the energy to throw a party! Nor could I even imagine scheduling it, when every single day is unpredictable.

    Beyond that, we have no where for people to sit. Our bedroom is Jim's room now, with a queen sized futon in it. The coffee table is a medicine chest, magazine shelf, etc. All of the things Jim needs at his disposal.

    Our back yard is dirt (our lawn died during the drought), and our patio furniture is falling apart. There was a time, when our lawn was lush, all of our plants and flowers were blooming and healthy, and it was beautiful and serene with Michael's waterfall garden. Now, it is depressing and barren, with no color, because we haven't had the time/energy to tend to it. Our plan is to put in concrete throughout. Again, when will I be able to schedule that major project?

    We can only do what we can do. So, I try very hard not to think about the things that we can't do.

    Thank you all for your continuing friendship on our journey.

    Love & Light,



    Rose
    Happy Birthday to Jim! So Awesome! One of my family members got the Keith Urban set and shared it with me. Trust me that set is party enough. It made me a big Keith Urban fan! So glad Jon is in on the fun!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  13. #317
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    Smile Move Over Eric Clapton!

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

    Jim's Keith Urban guitar and kit arrived today. Once again, Jim opened the door to find a large box ~ this one shaped like a guitar. What a surprise! He asked me if I'd bought him another guitar, thinking it might have been sent from one of our friends. I explained that one of our friends mentioned it, and I immediately ordered it for him. There are 30 DVD discs! And the guitar is really pretty!

    Jim watched the first two, without his guitars in hand, just to get a feel for the instruction. He laughed and said that he needed to start with something a little easier like "Happy Birthday." I reminded him that Keith said that the first few notes of "Sweet Home Alabama" are easy. "Just learn those notes, and everyone will think you can play the whole song!"

    The birthday cards from our friends are starting to pour in. Jim shook his head, so touched, "I've never received this many cards in all my 70 years!" I explained that this is our version of a party and that everyone wanted to participate to make this a very special birthday for him. We didn't get a chance to open them today, because Jim wanted to open them with Jonathan, who was sleeping most of the day, and when he woke up, John came over to turn him. So, we'll find some time tomorrow to start opening his cards.

    Jim's birthday is spanning days now, which is wonderful, and exactly what I wanted for him. He is joyful and excited about learning the guitar. He feels loved and cherished. He truly deserves this.

    Thank you all for your positive thoughts and healing energy, your prayers, love 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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  15. #318
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    Happy Birthday, Jim!

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

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