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Thread: Jim's Journey

  1. #11
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you as always for your prayers.

    My dad may have had an EKG, but that wouldn't be sufficient to discern heart disease. My dad had all the signs of heart disease, and he should have had a complete cardiac workup prior to surgery. The day of his surgery he hadn't even had a pulmonary functioning test. He had to have that, and surgery was rescheduled. Very small town hospital, serving a retirement community, with an arrogant, incompetent surgeon.

    All cancer drugs are absurdly expensive. Dr. K said that the Neupogen shot is quite pricey, although I can't recall now how much it cost.

    I think Dr. K has given up on the repeat bone biopsy now. There is no way that Jim could tolerate going through that again. Then, we had to wait for a very long time for results, which were relatively inconclusive.

    Meanwhile, Jim's wedding ring arrived early. I put it on his finger, and he said, "I do." It's very nice, and he says it's nicer than his original ring.

    However, as the day wore on, he wasn't able to remove it from his finger, likely from fluid retention. In the morning, when I put it on, he took it off and put it on several times to ensure the fit. There's a 30-day return policy, so if he needs a 1/2 size bigger, we can do that.

    I'm just happy that he has a ring now.

    THank you all for your love, prayers, and support. We pray for you and your loved ones and send you our love.

    Love & Light,



    Rose
    Hi Rose,

    So glad the wedding ring arrived! Congrats! Yikes! Not having any heart tests before surgery is insane because going under the knife is stressful on the heart! I’m so sorry!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #12
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    Rose, was heartened to read about Jim's blood results. The two of you have just done so great. I know it is hard every day, but you are still there taking good care of Jim and we all know you always will be.
    Virginia

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  5. #13
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    Rose, So happy you got the ring and it fit. Happy for the blood work results as well. Boy do I wish I could be there having a Stella! Love Stella! The pharmaceutical business is just that a big business. Not sure if you've ever seen the show Big Bang but there's a woman (Bernadette) who is a scientist who makes drugs for a big Pharma. On the show she has more than once referenced that the company created and illness and a drug to treat it all in one day. Meant to be funny, on . one level it is and then it's not.

    Mary Grace

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  7. #14
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    It's hard to believe, but my dad's surgery was 29 years ago, and of course, medicine wasn't as advanced then as it is now. Still, a full cardiac workup prior to a long surgery should have been protocol. It probably would have happened regardless, as a study was released shortly after he died that men over the age of 65 were at risk of a heart attack after any kind of surgery other than heart surgery.

    Virginia ~

    The stress of losing Jonathan takes its toll on us, but we still find ways to cope and work through our grief. We do laugh, because we know that it's important to our stress reduction, as are tears. We are just so grateful to be together and for Jim's improvements.

    And, we know that our friends here are sustaining us and are truly grateful for your love, prayers and support.

    Mary Grace ~

    Hey! C'mon over and have a Stella with Jim! Summer is the best time to open a cold one!

    Jim has never drank very much, but he used to enjoy an occasional Guinness or an after dinner sip of port. Of course, being British, he prefers European beers to American beers. The first time he had a Coors Light, he couldn't finish it. "That's not beer! That's bilge water!"

    We used to watch the Big Bang Theory and loved it, then it changed nights or times, or something, and we stopped watching it. I should watch it on Netflix or somewhere. You're right that the sketch is and isn't funny. It's biting humor.

    Jim loves his ring! I'm so pleased. Ordering on line was taking a chance that it would disappoint in some way, but it is exactly perfect as a replacement for Jim.

    JOHN'S VISITS

    Yesterday, John visited to celebrate our anniversary. He brought a lovely vase of roses and star lilies. He shared his photos of his golfing weekend in Pebble Beach. What a gorgeous place it is.

    He asked a question about our wedding, and I pulled out our wedding photo album. I laughed, "You don't have to look at all of the photos, I just got it out to show you what we were talking about with the way Jim created our wedding yard. Trellis, an L-shaped covered deck, altar."

    John said, "I want to look at all of the photos! Look how young you all are!"

    Then he asked whether we needed help with anything, and I mentioned our faulty bathtub spout, which needs replacing, but Jim couldn't get it off of the pipe. So, John removed it, and I placed it in a bag. He went to Lowe's to find another spout. He went back today to get the spout, and came this evening to put it on. He's gone back to his house for tools and now a soldering iron three times! Jim has tools enough to open a business, but they are disorganized and scattered. We wasted some time trying to find a wrench in the garage.

    Jim has been up, searching in the garage for tools, conferring with John in the bathroom, and overdoing it. I keep telling him to sit down, but he is being obstinate. Jim is Mr. Fix-It, and it frustrates him that he can't do this project for us.

    But that's why God placed John in our lives.

    When I thanked John and apologized that this had turned into a big deal, he smiled, "What else do I have to do? I'm happy to help you. Don't keep apologizing!"

    We are blessed.

    Thank you to all of you, who bless us every day with your love, prayers, and never-ending support.

    We love you and pray for you and your loved ones always.

    Love & Light,



    Rose

    PS: John just left after several hours of working on the spout. The last time he went to Lowe's, the cashier asked him, "So, is this the last time you'll be coming here tonight?"

    John laughed and said, "I sure hope so."

    John said that every time he works on a project in his home, he does the same thing. Eventually, he has a collection of useful tools and caulks and glues etc. Just like Jim has, except it's difficult to find anything.
    Last edited by Earth Mother 2 Angels; 07-17-2019 at 07:17 PM.
    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #15
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    It's hard to believe, but my dad's surgery was 29 years ago, and of course, medicine wasn't as advanced then as it is now. Still, a full cardiac workup prior to a long surgery should have been protocol. It probably would have happened regardless, as a study was released shortly after he died that men over the age of 65 were at risk of a heart attack after any kind of surgery other than heart surgery.

    Virginia ~

    The stress of losing Jonathan takes its toll on us, but we still find ways to cope and work through our grief. We do laugh, because we know that it's important to our stress reduction, as are tears. We are just so grateful to be together and for Jim's improvements.

    And, we know that our friends here are sustaining us and are truly grateful for your love, prayers and support.

    Mary Grace ~

    Hey! C'mon over and have a Stella with Jim! Summer is the best time to open a cold one!

    Jim has never drank very much, but he used to enjoy an occasional Guinness or an after dinner sip of port. Of course, being British, he prefers European beers to American beers. The first time he had a Coors Light, he couldn't finish it. "That's not beer! That's bilge water!"

    We used to watch the Big Bang Theory and loved it, then it changed nights or times, or something, and we stopped watching it. I should watch it on Netflix or somewhere. You're right that the sketch is and isn't funny. It's biting humor.

    Jim loves his ring! I'm so pleased. Ordering on line was taking a chance that it would disappoint in some way, but it is exactly perfect as a replacement for Jim.

    JOHN'S VISITS

    Yesterday, John visited to celebrate our anniversary. He brought a lovely vase of roses and star lilies. He shared his photos of his golfing weekend in Pebble Beach. What a gorgeous place it is.

    He asked a question about our wedding, and I pulled out our wedding photo album. I laughed, "You don't have to look at all of the photos, I just got it out to show you what we were talking about with the way Jim created our wedding yard. Trellis, an L-shaped covered deck, altar."

    John said, "I want to look at all of the photos! Look how young you all are!"

    Then he asked whether we needed help with anything, and I mentioned our faulty bathtub spout, which needs replacing, but Jim couldn't get it off of the pipe. So, John removed it, and I placed it in a bag. He went to Lowe's to find another spout. He went back today to get the spout, and came this evening to put it on. He's gone back to his house for tools and now a soldering iron three times! Jim has tools enough to open a business, but they are disorganized and scattered. We wasted some time trying to find a wrench in the garage.

    Jim has been up, searching in the garage for tools, conferring with John in the bathroom, and overdoing it. I keep telling him to sit down, but he is being obstinate. Jim is Mr. Fix-It, and it frustrates him that he can't do this project for us.

    But that's why God placed John in our lives.

    When I thanked John and apologized that this had turned into a big deal, he smiled, "What else do I have to do? I'm happy to help you. Don't keep apologizing!"

    We are blessed.

    Thank you to all of you, who bless us every day with your love, prayers, and never-ending support.

    We love you and pray for you and your loved ones always.

    Love & Light,



    Rose

    PS: John just left after several hours of working on the spout. The last time he went to Lowe's, the cashier asked him, "So, is this the last time you'll be coming here tonight?"

    John laughed and said, "I sure hope so."

    John said that every time he works on a project in his home, he does the same thing. Eventually, he has a collection of useful tools and caulks and glues etc. Just like Jim has, except it's difficult to find anything.
    Hi Rose,

    That’s a terrifying study! I’m so sorry again that your father was not tested and died. So glad John visited!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #16
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you. My dad passed two days before Christmas, 18 months after my mother died. We weren't told the stage of his cancer, only that it took 5 hours for surgery, as they continued to send tissue to the lab to determine what kind of cancer he had. I suspect that he had mesothelioma, given his service as a machinist's mate in the Navy during WWII, and his exposure to asbestos during his career as a mechanical engineer. He was also exposed when he worked at the White Sands Proving Grounds, where the first atomic bomb, Trinity, was tested.

    I don't think that he would have lived long after surgery, even if he'd had a cardiac workup. He was obese and had diabetes. The night before he died, he drove 30 miles, because he had a hankering for Tony Roma's ribs. He was not supposed to drive at all, and I begged him not to go on the phone that evening. But, he was stubborn and really wanted those ribs, which of course, were not good for his heart either.

    Meanwhile ...


    The diverter bathtub spout continued to leak, so Jim asked me to call our plumber. Unfortunately, they are working on a big project and won't be available until Monday. When I texted this information to John, he replied, "No problem. Tell Jim I'll be over later to hose him off in the backyard."

    Jim and I were both very tired yesterday from the spout commotion the night before. John was going to come over to replace/re-glue two beveled glass panels, which just fell out (but didn't break thankfully) of our kitchen cabinet doors. Jim was sleeping yesterday afternoon, so I told John to just relax and enjoy his evening.

    Today, was quiet, so Jim slept for several hours, while I did some work in the office upstairs.

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

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  13. #17
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you. My dad passed two days before Christmas, 18 months after my mother died. We weren't told the stage of his cancer, only that it took 5 hours for surgery, as they continued to send tissue to the lab to determine what kind of cancer he had. I suspect that he had mesothelioma, given his service as a machinist's mate in the Navy during WWII, and his exposure to asbestos during his career as a mechanical engineer. He was also exposed when he worked at the White Sands Proving Grounds, where the first atomic bomb, Trinity, was tested.

    I don't think that he would have lived long after surgery, even if he'd had a cardiac workup. He was obese and had diabetes. The night before he died, he drove 30 miles, because he had a hankering for Tony Roma's ribs. He was not supposed to drive at all, and I begged him not to go on the phone that evening. But, he was stubborn and really wanted those ribs, which of course, were not good for his heart either.

    Meanwhile ...


    The diverter bathtub spout continued to leak, so Jim asked me to call our plumber. Unfortunately, they are working on a big project and won't be available until Monday. When I texted this information to John, he replied, "No problem. Tell Jim I'll be over later to hose him off in the backyard."

    Jim and I were both very tired yesterday from the spout commotion the night before. John was going to come over to replace/re-glue two beveled glass panels, which just fell out (but didn't break thankfully) of our kitchen cabinet doors. Jim was sleeping yesterday afternoon, so I told John to just relax and enjoy his evening.

    Today, was quiet, so Jim slept for several hours, while I did some work in the office upstairs.

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

    Love & Light,



    Rose
    Hi Rose,

    Again I’m so sorry about your father! My BF who is diabetic tells me many diabetics die of heart attacks in the same way as the high sugar destroys vessels of the heart over time. Prayers continue.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #18
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    Hi Rose,

    At 4:10 into this video https://youtu.be/5dv7sxfWKmg appears to be something like what you were trying to do for Jim so he could have fruit.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  17. #19
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    ((((((funnylegs4)))))) ~

    Thank you for sharing this video. The segment about strawberries doesn't include rinsing them after the vinegar wash. Also, the vinegar wash in all of the links I have found indicate that the vinegar should be diluted with water.

    Jim has lost interest in berries, and I don't want to spend the time to try to clean them, if he is going to be disappointed in their flavor, and I have to throw them out.

    This Week:

    Tomorrow, the plumber will fix our bathtub spout. Tuesday, Nancy will visit to draw Jim's blood. I have quite a few things to do to sort out our stolen checks.

    This morning, I woke up with a brilliant red stress rash all over my torso and face. I'm hot, and it itches. Hmmm ... I wonder what brought this on?

    Jim didn't sleep well yesterday or last night, so he's making up for it today. His appetite is waning, and he didn't eat much yesterday. He didn't want his breakfast this morning, as he fell asleep. I made a nice brunch with scrambled eggs, veggie bacon, and potato pancakes with leftover mashed potatoes.

    Now, I have to entice him to eat dinner. I don't know what is going on, but I hope it is temporary.

    Thank you for your love and 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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  19. #20
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    Default I'm A Lucky Man

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

    We are still waiting for the blood work results from yesterday's draw. Jim's vitals are excellent, and he's feeling fine.

    Today, Jim ventured into the garage to bring in supplies, like bottled water, paper towels, etc. "What are you doing?" I asked.

    "Helping you. Helping me. Helping."

    It was 96 degrees here today, with a "real feel" of 105 degrees, and we finally had to turn on the air conditioning. Jim said he was okay with it, so we gave it a try, because both of us were sweating. The house thermostat read 86 degrees. The heat can really take the wind out of our sails sometimes.

    John visited for a little while, before his annual summer vacation to the desert. The whole family goes and stays in a condo. John said that if we were up to it, we'd be invited. "You could stay in the condo with the a/c, of course. The views are gorgeous." It's wonderful to know that we are family and welcomed wherever they are.

    Grief for Jonathan is beginning to overtake us, particularly me. Jim has been so wonderful consoling and comforting me. No one knows me better than Jim does or understands all that I've been through with our precious sons. He is hurting too, so together we work through it.

    The tears are beginning to flow for me now, which is an important release. I am crying more than I had been. I was holding it in for Jim, but at some point, I just had to let it all out.

    Sometimes, all it takes is bubbles out of a bottle of dishwashing liquid reminding me of the bubbles I used to blow for Jonathan and Michael, when we were laughing, singing, dancing, living and loving.

    Or a song, a movie, a memory ...

    Okay, millions of things make me cry now.

    I keep reminding myself that this is part of the grief journey, and that the First Year, with all of its Firsts, is excruciating. I have counseled many grieving parents, and I know this. I know how to work through it and to find peace. But, I'm back to the Firsts again, and it's unbelievably difficult.

    This is what propels Jim to fight cancer. He wants to be here for me. He wants to grieve with me and give me strength to carry on without him.

    These are the vows we exchanged, to be together until the end. For Jim, that means that as long as he is here, and he can do anything, he will.

    This morning, he made his breakfast. When I said, "I'm here! I'll make it!", Jim said, "Well, I'm here too, and I am able to make my own cereal. You don't have to wait on me right now. Let me help you."

    Jim isn't receiving any therapy for cancer. But here he is, after all he'd been through earlier in the year, up and about, bringing in supplies, making his own meals, cleaning up in the kitchen, taking out the trash.

    On May 31, John drove us to an appointment with Dr. K, and Jim was on 3 liters of O2. Jim had been through the mill, and Dr. K gave us the "end stage of life" discussion.

    Only 2 weeks later, Jim was off of O2, able to ambulate to/from the bathroom, and just continued to work toward building up his strength.

    To what do we attribute Jim's improvement? God's grace and tender mercies. Our Angels intervening. The prayers and positive energy, which we are receiving from all of you. CBD? All of these and more.

    We just give thanks for every day together.

    When I asked Jim this evening how he was feeling, he laughed, "Aside from peeing constantly thanks to Lasix, I feel great. And if peeing a lot is the worst thing I have to deal with, then I am very thankful. I'm a lucky man."

    Thank you all so much for your love, prayers, and endless support. We love you and pray for all of you every day.

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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