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Thread: Jim's Journey

  1. #271
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All))))))) ~

    Thank you so much, Jeanie, ANN, agate, and funnylegs4 for your candles, thoughts and prayers. It means so much to us to know that you care for us and support us on this special day.

    I lit candles in Jonathan's and Michael's rooms, and I thanked God for them, because they gave so much to us, to all of us. As did all of our Precious Angels, and all of our Angels here with us on Earth. I am not the only Earth Mother to Angels. There are millions of us.

    Again, I can't thank all of you enough for your gifts to us. God Bless You.

    JIM'S UPDATE

    After our lovely Indian meal, Jim told me yesterday morning that his stools were black. I texted and spoke on the phone with Nancy. We are waiting for the results of his Friday blood draw to see what it shows.

    From my research on the internet yesterday, I discovered that black stools indicate upper GI bleeding, including esophageal tears from coughing. Spicy food can also be a culprit. Diverticulitis would produce maroon bowels, and frank blood indicates a variety of problems.

    Jim does not want me to call Dr. K, or ask for a GI consult, or have paracentesis, or anything. He doesn't want to go to another appointment, then have stuff done to him, then be told to take this or that drug, or to stop eating this or that food. He's quite fed up now, and I don't blame him at all.

    He feels isolated, which we are and have been for years. I reminded him that in the hospital and the medical offices, he is a rock star. Everyone knows and loves him from valets to techs to nurses to doctors. But he doesn't want to go there for socialization or testing or treatments.

    I could always throw a big party and invite whoever might be able to attend. John's family is 10 people, and I can think of at least 10 more, who might attend. There is nowhere for any of them to sit. Or stand. Or eat. Our backyard is mud. Our garage is filled with boxes of supplies and donations. And laundry.

    No one could use the toilet, because that is Jim's domain. And he would spend most of the party in there. Flu season in upon us too, so there's that.

    It sucks, but it's unrealistic. It sucks, because we are very social people, and we remember the parties, the holidays, when we used to have lots of people in our home. We remember when we used to do a lot of things that we can no longer do.

    Grieving also complicates everything for us.

    Tonight, Jim told me that when he's ready to see a doctor or have a test, he will tell me. I reminded him that he has a standing appointment with Dr. K on 12/18, 9 days from today. Jim responded, "If I feel up to it then, I'll go."

    John texted me this morning to ask how we are and if we have any appointments this week. I told him what was going on, and of course, he is deeply concerned. John is wise beyond his years, as he has lost several friends to cancer, as well as his dad, and other relatives.

    So, we wait.

    We thank you so much for your love, prayers, positive, healing energy, and good thoughts for us. We pray for you and your loved ones and give thanks for the blessing you are in our lives.

    Love & Light,



    Rose
    You're very welcome Rose! Anything for you dear! I'm so sorry about the black stool and Dr visit fatigue. That totally sucks. I would come socialize with you and Jim to keep you company if I could. I suggest Jim keep his 12/18 appt and get it over with.
    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. #272
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    ((((((funnylegs4)))))) ~

    Thank you so much!

    I do want Jim to go to his Dr. K appointment, because we have to talk to Dr. K about what is going on and what Jim's choices are and what his decisions about those choices are. I am not going to persuade Jim to do anything at this point. These are his choices and decisions. If he doesn't want further treatment, then we'll take it from there.

    When I put myself in Jim's shoes, I can understand reaching a point where you just can't do it anymore. You're miserable, things are going South, and there's no cure. So, it's treat this with that, call this doc for that, take this pill, don't take that pill, spend time in the hospital, have a battery of tests. For what?

    I remember my great uncle in the early 1970s had cancer, and he endured chemo, surgery, radiation, whatever was available then, which wasn't as extensive as it is now. He was so sick from all of the treatments, and he was dying. He told my aunt, "If I knew I was going to die anyway, I would have never gone through all of this."

    We continue to live in hope, but there's only so many things that can be done to help Jim, and none of them promise him more than some semblance of comfort.

    We still don't have the results of Jim's blood work from last Friday! But the black stools began Sunday morning after our Indian meal. Jim tells me that his stools are getting lighter in color, but his production is small. He's not eating enough to produce more.

    I intended to make Shepherd's Pie today, but Jim requested potato salad and Tofurky Beer Brats sauteed with mushrooms and onions. I don't know how he's going to manage this meal, but it's what he requested, and he'll probably only eat a small quantity. I just don't know what his digestive system will think about it. I guess we'll find out.

    Thank you, funnylegs4, and everyone for your love, support, guidance and friendship. We love you and pray for you and your loved ones.

    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. #273
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    Rose, it sounds like Jim has begun a “life review” of sorts, but with food. He is wanting to enjoy some old favorites, and is probably reflecting on memories associated with them. This is really a healthy way to reflect on the past while acknowledging that he is still “in the game of life” if only via his fork.

    I admire that you are doing what you can to make these meals happen. Short of doing a ghost pepper challenge, I can’t see how any of it could be harmful.

    Cook on my friend! I hope Jim enjoys every bite.

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  7. #274
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    ((((((callyflower)))))) ~

    Yes, Jim is quite nostalgic, and we take trips down Memory Lane every day. He's actually been this way since we first met 27 years ago, but it's more pronounced now. So, I just listen and let him revel in the memories of running through the fields in England, picking fruit from trees and eating them right there, being invited in by the neighbors for a cuppa or an entire breakfast. The scenes are vivid as he describes them to me. And it's almost always tied to food. Pub food is a favorite memory.

    When he was a scaffolder, people would bring food and tea out to him and his crew or invite them in for tea and biscuits. When his mother was home, she was in the kitchen ready to make chips and fish, chicken, beans, eggs, bacon, whatever anyone wanted. His father had a plot, where he grew prize vegetables and fruit, so he had access to fresh produce. And double Devon cream.

    Jim is an excellent cook, and his specialties are English roasted potatoes (divine), Yorkshire pudding, his very own creation of Diane Sauce, Shepherd's Pie (his is so much better than mine), and saffron rice. He loves to watch cooking shows.

    And, of course, Indian food, as there was a large Indian population in England, also, of course. Jim loves Indian food like I love Mexican food, because that is what we ate growing up. Through each other we have learned to love both. Jim always enjoys veggie tacos, fajitas or burritos. And I'm finishing off the Indian leftovers I made, because Jim is a little concerned about having them because of the black stools.

    Tonight, I ground the Tofurky brat (only one to split between us, because he can't take the volume, nor can I, since I'm also eating less). Then I sauteed it with sweet onion (only a little) and mushrooms in ghee. Jim asked for me to top it with a little bit of shredded cheddar cheese and a 1/2 tsp of Dallalo bruchetta tomato topping. It was very tasty! We had a helping of my "famous" (per Jim) potato salad, which Jim said was one of my best efforts.

    To top it off, Jim said, "Let's celebrate the good news! I'd like half of a Stella Artois, please!"

    What good news, you might ask?

    BLOOD TEST RESULTS

    Finally, they are in. And Dr. K's comment was "Labs not too bad." Ha! More like "Labs are unbelievably good!"

    WBC, RBC, Hemoglobin, Hematocrit, Platelets, Glucose, AST and Alk Phos (Liver), Neutrophils, all of the other "phils", everything is improved. His AST is in the normal range, which hasn't been the case for so long. And his Neutrophils are 2.8, which is a major increase from last month.

    It's so uplifting to have these results, even though Jim doesn't feel that great, at least he's physically in pretty good shape, based on these results and his continuing excellent vitals.

    So, Jim said to me tonight, "When you go to Instacart this week,would you get me some Guinness? I haven't had one in a very long time, and I'd really enjoy that."

    Many times, Jim has told me of the lore that Guinness is good for 'ya! Healthy, it is! I really don't know, but if he wants a Guinness every so often, he shall have one. This isn't a regular thing for him. Maybe once every couple of weeks, he just wants half of a Stella, or now a Guinness.

    So, yes, Jim is reliving his past through food and beverage. Whatever I can do to keep that happening for him, I will do.

    Thank you for your support and encouragement. I hope that you and your family are well. Our prayers are with you.

    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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  9. #275
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    Try and get the Guinness with the little nitrogen ball inside the can. It releases when the can is opened and it will pour and taste like a beer right out of the pub. My husband recently discovered those.

    Also, I just discovered Beyond Meat. I had a burger at a vegan place in Fort Worth and was astounded. All the parts of meat taste I used to enjoy, with none of the parts I didn’t. It’s made with peas and mung bean and comes in raw “ground beef” form, so you can sub it in for anything.

    I have some in my curbside grocery order today. I plan to have a burger tonight and will then move on to make a Beyond Meat Loaf! Oddly enough, my great gram’s meatloaf is one of only 2 meat foods I’ve craved since becoming veggie.

    We are doing well. My daughter’s semester finishes tomorrow. She’s finally hit her stride in her demanding microbiology program and is making strong A’s again. I thought she might have lost her way for a while, so the relief is palpable.

    Hugs,

    C
    Last edited by callyflower; 12-11-2019 at 04:55 AM.

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  11. #276
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    ((((((callyflower)))))) ~

    Great news that your daughter is scoring A's in her microbiology courses! That is just awesome! I'm sure she'll appreciate a break over the holidays from the stress.

    Jim loves Beyond Meat burgers, but, I have to caution you that they aren't all that healthy. I can't find the link right now, but I read a comparison of ingredients and benefits and faults with Beyond Meat, Impossible and meat burgers.

    I can't stand Beyond Meat burgers, or the smell of them, but that is because I don't miss meat at all. I know that meat messed up my digestive system, so I don't miss it. For burgers, I prefer Amy's Sonoma or California burgers, or Field Roast Burgers. They don't taste like meat, as do the Beyond Meat and Impossible Burgers, but that is fine with me.

    Jim and I didn't care for the Beyond Meat crumbles. We prefer Yves crumbles for tacos and Shepherd's Pie, etc. But we do use Beyond Meat chicken strips, which don't taste anything like chicken, for fajitas.

    Give Field Roast products a try. They have such a great assortment now.

    When we first became vegetarians, we ordered dried food on line to meet or meat alternative needs. That stuff was awful compared to what is available now! But I used to eat soy nuts, when menopause overwhelmed me, and they worked, so I was grateful for that. Soy is estrogen-producing.

    I'm glad that you are pursuing a vegetarian diet.

    Tonight, Jim mentioned falafels, pita, tzatziki dip, and garlic roasted potatoes. That will be on my grocery list for tomorrow's Instacart run.

    GOOD NEWS~

    Stool is normal color, no longer black now.

    Jim and I have had some "Big Picture" discussions today. This may be the beginning of the letting go process. We are not ready for this process, but we have to work our way into it, so we can get through it.

    We wish everyone a blessed holiday season, as stress-free as possible, filled with joy, hope, and peace.

    Our prayers are with you always.

    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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  13. #277
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    I have been veggie for about 10 years now. The Beyond Meat will not be a staple in my diet, but rather an occasional treat...junk food. I usually have portobello mushroom burgers.

    I absolutely hate any of the Field Roast products. I tried, but find them terrible. We are all so different! I rarely use fake meat of any kind. I made lasagne last weekend by subbing in mushrooms, zucchini and chopped walnuts. Yummy.

    Lots of things other than blood can cause dark stool. Different foods, meds such as Pepto Bismol, come to mind. It is also easy enough to run a fecal occult blood test. It’s as easy as wiping your butt!

    It’s good you are having the big discussions. Letting go is an important process, and deserves lots of consideration. It’s never easy, but so important.

    Hugs,

    C

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  15. #278
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    Hi Rose and everyone,
    Rose, I am so relieved that Jim's stool is back to normal. That's one less thing to worry about. It's been a busy week over here. I went to two conferences - Children's Healthcare Canada followed immediately by Kids Brain Health Network. The CHC conference was focused on trauma in parenting very sick children and complex care - something we know about! I was interested to hear clinicians speaking alongside parents. Kids Brain Health is a neuro research organization that I know well because I served 6 years on the board. I was on a panel of our co-instructors of a course teaching researchers and parents how to work together on research projects. I got involved initially in all this stuff because I hoped that by influencing research, I could somehow influence healthcare for children with disabilities. Too early to say whether this is happening but at least we're all talking and listening. I think our stories matter.
    Got home last night with a sore neck from a very cold conference room, had a hot bath and then slept for 2 hours before having a late dinner. I think I might be too old to start breakfast meetings at 6:30am and then go till 11pm. I used to be able to do it when Nick wasn't sleeping and living at home, but not anymore. My white hair gives me away - I am getting old! Well, I just mention all this conference stuff in case anyone is interested in research. Let me know and I'll see what I can learn about the latest in the science of your child's diagnosis. Today was all about wrapping gifts and cleaning the house. Jim went to Nick's to help him get his Christmas presents ready (homemade wine bottled and labeled with his OWN designed labels). He is so excited to give these to all his friends and family!

    Well, tonight we are watching the UK news and feeling very sad for the country - it looks like it will be a majority for Boris Johnson and that means Brexit. To us, we think it's a huge step backwards for the UK and will mean v tough times especially for the vulnerable. I'm very worried.

    Rose, I am so glad that so many lit candles and remembered Jon and Michael. All that loving energy flowing towards you, Jim and your angels is powerful, I know it. Did you receive my photo of our candle? Lots of love, Donna 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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  17. #279
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    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for telling me that other things, besides blood, can cause a black stool. A dear friend mentioned that Tums, which Jim does take in lieu of Nexium, caused black stools for her. My concern was that the black stools began a few hours after Jim ate the Indian food. That may have just been a coincidence, but my worry was that it was too spicy and caused a vessel tear.

    ALL ABOUT FOOD

    Jim's been avoiding Orgain, because the last one he had seemed too sweet to him. His taste buds are all off. I'd like for him to try it again, because he needs the protein and all of the good stuff in it. He is not eating enough. I can tell in his face that he is losing weight, which makes his gut look even more enormous.

    Falafel mix wasn't listed on the Instacart page today, but I requested it, and the shopper didn't even know what it was. I asked him to speak to a store employee, and he found the General Manager, who found the mix.

    Jim said he'd love to have it for dinner. I was going to make garlic roasted red potatoes to accompany the falafel/pita sandwich, but Jim has been sleeping most of the afternoon. The later it gets in the day, the harder it is for me to stand in the kitchen on the concrete slab to cook a meal. So, he agreed that frozen "house cut" fries would be acceptable. I also want to make the tzatzki sauce so it can be in the fridge for an hour at least.

    Yes, everyone is different in their food choices.

    What don't you like about Field Roast? Have you tried their frozen options, like Fruffalos and Corn "Dogs?" They also have a new "country style" patty. We'll have their Celebration Roast for Christmas dinner.

    Have you tried any Tofurky products? Yves, which is usually in the deli section? Or Gardein? (Chrissie Hynde from The Pretenders had a vegetarian restaurant in her hometown in Ohio, and she served Gardein years ago.)

    I used to eat Boca chicken patties, and Jim used to eat different types of Quorn, but we both lost our interest in them long ago.

    It's all processed, but we need protein. I'm sure that it's healthier than a lot of the food I ate as a kid/teenager/young adult. At least we try to have plenty of fresh organic veggies and fruits, and the majority of what we eat is organic.

    FUTURE TALK

    I finally applied for and am now receiving Social Security. I waited until I was "retired," in other words, until after Jonathan passed. I know that it took me too many months to do this, but, well, if you've been reading about our saga, you can understand why.

    Social Security sent a letter to Jonathan, Michael and Jim informing them that they could claim SS benefits off of my claim. That was hurtful, but it is the government after all. There are a ton of questions to answer to get SS benefits, but I sailed through the online application and didn't have to go to the SS office.

    I told Jim that I'd probably have to ask him many questions, and he will need to remember specifics about his past, before we met, for me to fill out the form. He is displeased, to put it lightly. Then, he was stressed over it. "How much more will we get? $20?" Of course, I have no idea, until after I complete the form the amount of the benefit.

    Jim should be entitled to at least as much as I am, because for the past 27 years, he was a co-careprovider with me. My name is on all of the paychecks, but we're married with a joint account, so we shared the income with each other, as well as with our children. Government forms aren't designed for these unusual circumstances, of course.

    Jim was already feeling upset, useless, incapable of doing anything meaningful. Now, the government wants to interrogate him about his past life to see if he qualifies to earn money from my SS benefit. Humiliating. Like he has no worth on his own merit, which, of course, he does a million times over.

    I reminded Jim of all of the things he has done to our home through the years. We have the most beautiful gate in the community, and I'm not being conceited. I walk everywhere here. Sure, the exterior and interior of these homes have been renovated, but their gates don't compare to the one Jim installed.

    He built his own scaffolding to install our windows on the second floor. We were the first in the neighborhood to have new windows. He installed Pergo flooring throughout every room in the house. He's painted every room in the house at least once. He built an accessible deck in the backyard, which we also used for our wedding.

    I also reminded him of everything he did for our children, from Day One. At their bedside in ICU at night. Working the night shift at home. Changing traches, flushing bleeding catheters, suctioning through the trache, changing diapers, bathing, lifting, turning, feeding, loving. He gave Jonathan CPR.

    God sent Jonathan and Michael the world's most wonderful dad, and to me the world's most loving husband. If that isn't an outstanding accomplishment, then I don't what else would qualify above it.

    As far as a social life, I reminded Jim that he's a rock star in the world of medical care. He is so beloved by everyone, who has known him these past 3 years. They are always happy to see him, and I'm sure that's because they love him, and he's still alive to be seen.

    Jim is a fighter, and he has been battling like a valiant warrior against cancer. And we've been blessed with more time together than we initially expected to have. Because he's fighting, I'm caring for him, our sons are watching over him, and all of you are praying for him and sending him healing energy.

    I reassured Jim that, as always, every decision about his care and treatment is his. I will advise, suggest, but he has the final say in everything. I will support Jim no matter what he chooses to do or not do. I won't pressure him to reconsider or try to persuade him in anyway. I told him that I completely understand if he is done with all of this. If he refuses tests, or treatments, or any intervention, I understand.

    He doesn't want to leave me. I don't want him to suffer. It's Christmastime, so we are re-enacting "The Gift of the Magi." We have never needed the holidays to lead us to our Magi gift relationship. We've been doing this for each other for 27 years.

    There are more difficult and painful conversations before us, but we're taking this as it comes right now. We are both fragile. Yet, we are strong.

    Thank you, callyflower, and all of our friends here for your love, support, prayers and positive, healing energy. We feel it, and we are so grateful to you and thank you for the blessing you are in our lives.

    Our prayers are with you and your loved ones ~

    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. #280
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    Thanks for the update Rose! When having "Big Picture" talks remember how good Jim's blood work still is, and yet be realistic. Impossible Whoppers are vegan but they are not health food at all. One of my disabled friends tried to get SS and showed me how it works as they did it, and I couldn't even figure it out at my age without a cancer brain, so tell Jim to go easy on himself.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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