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    Originally posted by Earth Mother 2 Angels View Post
    ((((((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

    Comment


      ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        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.

        Comment


          ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

          Comment


            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, 03:55 AM.

            Comment


              ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

              Comment


                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

                Comment


                  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

                  Comment


                    Food and Future Talk

                    ((((((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, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      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

                      Comment


                        Hi Rose,
                        Just wondering how you are doing. We are fine - had a shopping trip yesterday to bookshops and Starbucks with Nick. He has grown a goatee! Sending much love and thinking of you.
                        Donna xox
                        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

                        Comment


                          Real Life

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

                          Thank you funnylegs4 and Donna ~

                          We have had an assortment of hectic things happening in the past several days, which is why I haven’t posted.

                          HOUSEHOLD PROBLEMS

                          I found water under our washer, thinking it was leaking.

                          I also discovered that we have a serious mold problem under our kitchen sink, thanks to a leaking faucet.

                          I called our plumber (wonderful family owned company) to look at the mold problem. He showed me how the faucet leaked back into the tubing, which caused the mold. He said, “I’m not going to put my head under there.” He referred me to a water restoration company.

                          As a courtesy, he checked the water under the washer. “That’s not your washer. That’s your old hose bibbs (faucets) and hoses. I’ll replace those today, so you can get back to washing.” He saw my mounds of laundry everywhere and knew it was important to get this fixed fast. He didn’t charge labor, only for parts.

                          Actually, we did well to have the same hose bibbs and hoses for 42 years without a problem. I’m so grateful that we don’t have to buy a new washer.

                          I’m taking everything out of the cabinet under the sink and throwing it out in plastic bags. Now those supplies will be in a box in Michael’s room temporarily. I ordered a stainless steel kitchen trash bin, which will also go into Michael’s room.

                          I just want to get through the holidays, before we start the mold removal process. I’m keeping the door closed, per the plumber’s suggestion, and the faucet is hanging down when we use it, so it can’t leak back into the tube. I’m just praying that they won’t want to tear apart our entire kitchen.

                          JIM’S UPDATE

                          Very fatigued, frustrated, thinking about a million things, wanting his old life back, all the way to his youth in England, angry that he has no options left, struggling with appetite due to Ascites and digestive issues.

                          He went 1 1/2 days without a BM and was beginning to panic. He wasn’t eating, because he didn’t feel he had room. I was finally able to get him to eat leftover Shepherd’s Pie, and he hasn’t stopped pooping since. I told him that his body is changing, so this may be its new process, to shut down for a day or so and then take off like gangbusters. Now that his bowels are moving, he is eating better. He has lost weight.

                          Today’s Appointment with Dr. K

                          Jim felt wobbly today, but he managed to take a shower and shave and dress himself.

                          John dropped us off in plenty of time for our 11:30 appointment. I got Jim the last available wheelchair, which should be thrown in the trash, because it is worn and torn. Jim said the seat was like sitting on the floor. I need to issue a complaint about that at some point.

                          Jim decided to take the long way, and it is a long way, to the elevators to get to the Oncology unit, which is also a long way from the elevators with lots of turns and cross traffic. I am maneuvering this wicked w/c, pushing Jim and using the handle brake. My arthritic hands and back were not happy.

                          We walked past the rad onc department and recognized the young lady, who we comforted on our second radiation appointment. She looked good and was smiling and talking to the nutritionist. We said hello to her and she smiled back and waved.

                          At the elevator, we ran into none other than Dr. S! And the dreaded Dr. D, as well as another tech or doctor. Because Jim cannot tolerate Dr. D, I wanted to wait for the next elevator, but they insisted that we join them. Awkward in so many ways: I had to move Jim around in the w/c so one of the passengers could exit on the 2nd floor. And being in close quarters with Dr. D. And Dr. S. We wished them all a happy holiday, when we exited. They wished us the same. Weird. And, just, why? Why did that happen?

                          The Waiting

                          We checked in right at 11:30. We sat in the waiting room watching the room TV with the depressing local news, and then Maury what’s his name with the screaming guests and chair throwing came on. The folks in the waiting room requested a channel change, and we ended up with a reality show about Southern men, who track down snakes in the swamps. Just charming. So festive. UGH!

                          Jim was finally taken to the exam room about 12:45. I kept texting John to let him know we were still waiting, and he was fine with that, as he was visiting his niece, who spent the night in the hospital across the street and was being released today, with all tests being normal, thankfully.

                          Finally, Dr. K arrived, smiling, kind, honest.

                          Ascites

                          He looked at Jim’s gut and said, “Well, that’s not too bad.”

                          I joked, “We’re expecting quadruplets!”

                          He chuckled. “Paracentesis is an option, but as you say, its effects are temporary. And doing that too frequently could cause problems for you. I recommend that you try weighing yourself everyday at the same time, then if you increase weight by more than 5 pounds, you add another 20 mg of Lasix to your day in the afternoon. Take 40 mg in the morning, 20 in the afternoon. Do that and see if you get rid of more water/weight. Also measure your gut everyday.”

                          We have been weighing and measuring, but in the past few days, we have not.

                          He also said, “I don’t know whether the Ascites is from your liver or your cancer, or both."

                          Treatment Options

                          “You’re not a candidate for chemo, because of your blood levels. And by the way, your blood levels this last time were really good. I mean, not good enough for you to do chemo or immuno again, but at this point, they are actually excellent, for you. I can’t in good conscience give you Opdivo again, although it worked great for you, until it gave you all of these problems you have now.”

                          There is another drug he mentioned, but it isn’t very effective without a chemo chaser, and he didn’t feel that it would benefit Jim, and the risks were too great for him.

                          Radiation

                          Dr. K said that it takes at least 8 weeks for radiation to do its job in reducing the tumor size. So he asked if Jim would be willing to have a CT scan in early January, before Jim’s appointment with Dr. S, the rad onc. He said the scan would give Dr. S a clearer idea of how well the treatment is going. He will also be able to see other places, where radiation might be needed, if Jim wanted to have it.

                          Jim agreed to have the scan.

                          Brain MRI

                          Dr. K asked Jim if he could manage having a brain MRI at the same time as his CT scan. “We haven’t looked at your brain for quite awhile.”

                          Jim doesn’t have headaches. His vision is blurry, but he also has an untreated cataract in his right eye, and the cataract and surgery to stop floaters in his left eye is wearing off. He gets dizzy, when he sits up too fast. He felt wobbly today, but he managed fairly well getting in and out of the car and w/c. He also says he feels thick headed sometimes, but he’s taking codeine periodically, and he isn’t sleeping for long intervals due to going to the bathroom constantly. I also forgot to ask him if he’d taken his THC before bed last night.

                          Nonetheless, Jim agreed to have the MRI. “We might as well know as not know, right, honey?”

                          “It’s your call, and I support your decisions,” I replied. “Do you think you can manage the claustrophobia?”

                          “If I can’t, I’ll tell Mark, and he’ll stop.” (Mark is the CT/MRI fellow, who we often see in the corridors, especially when Jim had his radiation.)

                          Maybe Mark will allow me to be with Jim. We can ask. Mark is just a lovely, kind man. He cried when we told him about Jonathan’s passing. I’ll never forget Mark saying, “This must be so difficult and painful for both of you. I know he was your everything. Jim told me all about him and you and your family. My heart breaks for you both.”

                          DNR And Other Things to Consider

                          Dr. K asked Jim if he wanted to have CPR, intubation, or defib. Jim said, “No. I don’t. What’s the point? I’m dying. When it’s time, it’s time.” Jim looked at me, his eyes welling, “Is that okay with you, honey?”

                          I looked at Jim, then Dr. K and his sad eyes, “I don’t know whether I’d say that I’m good with it. But I accept it. I accept whatever you choose Jim.”

                          Dr. K nodded understandingly. “If you are unable to make a decision, Rose will make it for you. You’re both on the same page. I will note this in your chart, if that’s okay with you.”

                          “It is,” Jim and I said in unison.

                          Then, the tears flowed for Jim, and I came over to him to comfort him, my arms around him, kissing his beanie (on his head). “It’s okay, honey.”

                          “I don’t want to leave this little lady. She’s been through too much. But, I know reality, and we’ll just have to find a way to cope with it,” Jim said to Dr. K.

                          Dr. K looked so sad too. How many times has he seen this with his patients and family? It must be such a difficult job to be an oncologist, when so many of your patients only make it so far.

                          In fact, I just remembered that I spoke on the phone to Dr. K the afternoon of Jon’s passing, and I told him the we had lost Jon. His response was shock and tremendous compassion for us. So, he understands that we’ve been through quite a lot.

                          Christmas

                          I don’t have a single decoration up. I did order personalized ornaments for Jonathan and Michael for the tree in Michael’s room. I haven’t been able to stop the madness long enough to open the package and cope with this new tradition for Christmas, and always, because the gold wrought iron tree will be up until I’m gone. Lit up, with all of their special ornaments on it.

                          We’ve had our fair share of difficult Christmas and holiday seasons through the years. Many Christmases and holidays we’ve been in ICU with Jonathan or Michael. For 17 years now, we’ve missed Michael’s physical presence for Christmas, and now it’s our first Christmas without Jonathan.

                          I want and need to make this the best Christmas for Jim and for me. It’s just getting the initiative and energy to do that, which I am lacking.

                          John will visit us on Christmas Eve, which is his favorite day, he said, “because its about the anticipation of Christmas Day.” He loves his inner child.

                          That basically sums it all up for now. I hope that I haven’t worn you out! It’s a lot. I know.

                          We are thinking of all of you during the holiday season, praying for your health, happiness, well being, and joy. Thank you all for loving, praying for, and supporting us. We love you, and we pray for you and your loved ones.

                          Blessings to All ~

                          Love & Light,



                          Rose
                          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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                            Dear Rose, I feel so sad for you and for Jim. The holidays will be so sad without Jon and so much unknown looming for Jim. I don't know, maybe this is an opportunity to remember your beautiful sons and to feel all the grief that you couldn't when Jon died. Maybe Christmas this year is meant to be a time of sadness for you this year mixed with the bittersweet joy of remembering the love and happy times you all had together. And maybe decorations will look different this year without a tree, but a plate or bowl for your personalized decorations instead. And candles for remembering and as you say, love and light. Oh, how I wish I was there to go through with you whatever it is that you are feeling - to be able to support you as a friend. Thinking of you now and every day my dear.
                            Donna xo
                            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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                              Originally posted by Earth Mother 2 Angels View Post
                              ((((((Hugs to All)))))) ~

                              Thank you funnylegs4 and Donna ~

                              We have had an assortment of hectic things happening in the past several days, which is why I haven’t posted.

                              HOUSEHOLD PROBLEMS

                              I found water under our washer, thinking it was leaking.

                              I also discovered that we have a serious mold problem under our kitchen sink, thanks to a leaking faucet.

                              I called our plumber (wonderful family owned company) to look at the mold problem. He showed me how the faucet leaked back into the tubing, which caused the mold. He said, “I’m not going to put my head under there.” He referred me to a water restoration company.

                              As a courtesy, he checked the water under the washer. “That’s not your washer. That’s your old hose bibbs (faucets) and hoses. I’ll replace those today, so you can get back to washing.” He saw my mounds of laundry everywhere and knew it was important to get this fixed fast. He didn’t charge labor, only for parts.

                              Actually, we did well to have the same hose bibbs and hoses for 42 years without a problem. I’m so grateful that we don’t have to buy a new washer.

                              I’m taking everything out of the cabinet under the sink and throwing it out in plastic bags. Now those supplies will be in a box in Michael’s room temporarily. I ordered a stainless steel kitchen trash bin, which will also go into Michael’s room.

                              I just want to get through the holidays, before we start the mold removal process. I’m keeping the door closed, per the plumber’s suggestion, and the faucet is hanging down when we use it, so it can’t leak back into the tube. I’m just praying that they won’t want to tear apart our entire kitchen.

                              JIM’S UPDATE

                              Very fatigued, frustrated, thinking about a million things, wanting his old life back, all the way to his youth in England, angry that he has no options left, struggling with appetite due to Ascites and digestive issues.

                              He went 1 1/2 days without a BM and was beginning to panic. He wasn’t eating, because he didn’t feel he had room. I was finally able to get him to eat leftover Shepherd’s Pie, and he hasn’t stopped pooping since. I told him that his body is changing, so this may be its new process, to shut down for a day or so and then take off like gangbusters. Now that his bowels are moving, he is eating better. He has lost weight.

                              Today’s Appointment with Dr. K

                              Jim felt wobbly today, but he managed to take a shower and shave and dress himself.

                              John dropped us off in plenty of time for our 11:30 appointment. I got Jim the last available wheelchair, which should be thrown in the trash, because it is worn and torn. Jim said the seat was like sitting on the floor. I need to issue a complaint about that at some point.

                              Jim decided to take the long way, and it is a long way, to the elevators to get to the Oncology unit, which is also a long way from the elevators with lots of turns and cross traffic. I am maneuvering this wicked w/c, pushing Jim and using the handle brake. My arthritic hands and back were not happy.

                              We walked past the rad onc department and recognized the young lady, who we comforted on our second radiation appointment. She looked good and was smiling and talking to the nutritionist. We said hello to her and she smiled back and waved.

                              At the elevator, we ran into none other than Dr. S! And the dreaded Dr. D, as well as another tech or doctor. Because Jim cannot tolerate Dr. D, I wanted to wait for the next elevator, but they insisted that we join them. Awkward in so many ways: I had to move Jim around in the w/c so one of the passengers could exit on the 2nd floor. And being in close quarters with Dr. D. And Dr. S. We wished them all a happy holiday, when we exited. They wished us the same. Weird. And, just, why? Why did that happen?

                              The Waiting

                              We checked in right at 11:30. We sat in the waiting room watching the room TV with the depressing local news, and then Maury what’s his name with the screaming guests and chair throwing came on. The folks in the waiting room requested a channel change, and we ended up with a reality show about Southern men, who track down snakes in the swamps. Just charming. So festive. UGH!

                              Jim was finally taken to the exam room about 12:45. I kept texting John to let him know we were still waiting, and he was fine with that, as he was visiting his niece, who spent the night in the hospital across the street and was being released today, with all tests being normal, thankfully.

                              Finally, Dr. K arrived, smiling, kind, honest.

                              Ascites

                              He looked at Jim’s gut and said, “Well, that’s not too bad.”

                              I joked, “We’re expecting quadruplets!”

                              He chuckled. “Paracentesis is an option, but as you say, its effects are temporary. And doing that too frequently could cause problems for you. I recommend that you try weighing yourself everyday at the same time, then if you increase weight by more than 5 pounds, you add another 20 mg of Lasix to your day in the afternoon. Take 40 mg in the morning, 20 in the afternoon. Do that and see if you get rid of more water/weight. Also measure your gut everyday.”

                              We have been weighing and measuring, but in the past few days, we have not.

                              He also said, “I don’t know whether the Ascites is from your liver or your cancer, or both."

                              Treatment Options

                              “You’re not a candidate for chemo, because of your blood levels. And by the way, your blood levels this last time were really good. I mean, not good enough for you to do chemo or immuno again, but at this point, they are actually excellent, for you. I can’t in good conscience give you Opdivo again, although it worked great for you, until it gave you all of these problems you have now.”

                              There is another drug he mentioned, but it isn’t very effective without a chemo chaser, and he didn’t feel that it would benefit Jim, and the risks were too great for him.

                              Radiation

                              Dr. K said that it takes at least 8 weeks for radiation to do its job in reducing the tumor size. So he asked if Jim would be willing to have a CT scan in early January, before Jim’s appointment with Dr. S, the rad onc. He said the scan would give Dr. S a clearer idea of how well the treatment is going. He will also be able to see other places, where radiation might be needed, if Jim wanted to have it.

                              Jim agreed to have the scan.

                              Brain MRI

                              Dr. K asked Jim if he could manage having a brain MRI at the same time as his CT scan. “We haven’t looked at your brain for quite awhile.”

                              Jim doesn’t have headaches. His vision is blurry, but he also has an untreated cataract in his right eye, and the cataract and surgery to stop floaters in his left eye is wearing off. He gets dizzy, when he sits up too fast. He felt wobbly today, but he managed fairly well getting in and out of the car and w/c. He also says he feels thick headed sometimes, but he’s taking codeine periodically, and he isn’t sleeping for long intervals due to going to the bathroom constantly. I also forgot to ask him if he’d taken his THC before bed last night.

                              Nonetheless, Jim agreed to have the MRI. “We might as well know as not know, right, honey?”

                              “It’s your call, and I support your decisions,” I replied. “Do you think you can manage the claustrophobia?”

                              “If I can’t, I’ll tell Mark, and he’ll stop.” (Mark is the CT/MRI fellow, who we often see in the corridors, especially when Jim had his radiation.)

                              Maybe Mark will allow me to be with Jim. We can ask. Mark is just a lovely, kind man. He cried when we told him about Jonathan’s passing. I’ll never forget Mark saying, “This must be so difficult and painful for both of you. I know he was your everything. Jim told me all about him and you and your family. My heart breaks for you both.”

                              DNR And Other Things to Consider

                              Dr. K asked Jim if he wanted to have CPR, intubation, or defib. Jim said, “No. I don’t. What’s the point? I’m dying. When it’s time, it’s time.” Jim looked at me, his eyes welling, “Is that okay with you, honey?”

                              I looked at Jim, then Dr. K and his sad eyes, “I don’t know whether I’d say that I’m good with it. But I accept it. I accept whatever you choose Jim.”

                              Dr. K nodded understandingly. “If you are unable to make a decision, Rose will make it for you. You’re both on the same page. I will note this in your chart, if that’s okay with you.”

                              “It is,” Jim and I said in unison.

                              Then, the tears flowed for Jim, and I came over to him to comfort him, my arms around him, kissing his beanie (on his head). “It’s okay, honey.”

                              “I don’t want to leave this little lady. She’s been through too much. But, I know reality, and we’ll just have to find a way to cope with it,” Jim said to Dr. K.

                              Dr. K looked so sad too. How many times has he seen this with his patients and family? It must be such a difficult job to be an oncologist, when so many of your patients only make it so far.

                              In fact, I just remembered that I spoke on the phone to Dr. K the afternoon of Jon’s passing, and I told him the we had lost Jon. His response was shock and tremendous compassion for us. So, he understands that we’ve been through quite a lot.

                              Christmas

                              I don’t have a single decoration up. I did order personalized ornaments for Jonathan and Michael for the tree in Michael’s room. I haven’t been able to stop the madness long enough to open the package and cope with this new tradition for Christmas, and always, because the gold wrought iron tree will be up until I’m gone. Lit up, with all of their special ornaments on it.

                              We’ve had our fair share of difficult Christmas and holiday seasons through the years. Many Christmases and holidays we’ve been in ICU with Jonathan or Michael. For 17 years now, we’ve missed Michael’s physical presence for Christmas, and now it’s our first Christmas without Jonathan.

                              I want and need to make this the best Christmas for Jim and for me. It’s just getting the initiative and energy to do that, which I am lacking.

                              John will visit us on Christmas Eve, which is his favorite day, he said, “because its about the anticipation of Christmas Day.” He loves his inner child.

                              That basically sums it all up for now. I hope that I haven’t worn you out! It’s a lot. I know.

                              We are thinking of all of you during the holiday season, praying for your health, happiness, well being, and joy. Thank you all for loving, praying for, and supporting us. We love you, and we pray for you and your loved ones.

                              Blessings to All ~

                              Love & Light,



                              Rose
                              Hi Rose,

                              I’m so SO sorry the DNR talk has to happen at all, but since it has to happen I’m glad you are addressing it early enough that Jim’s wishes are made clear. You wouldn’t want an outside medical professional to make those decisions for you and end up making the wrong one. I hope you don’t mind me asking this: I remember a few posts/threads ago when you discussed DNR before and you said that Jim would not receive life saving measures for a cancer related respiratory or cardiac arrest but that he would receive medical help if another medical emergency like a regular heart attack or accident were to happen?? Is this still the case? Can Jim remove the DNR if he wants to later? If it’s too painful to answer you don’t have to answer this. The dizziness could be from the brain radiation that could have changed his brain wiring. His blood pressure could change causing dizziness. Perhaps the extra fluid contributes to dizziness somehow. I'm so sorry he's dizzy! Merry Christmas to all of you! You will find a way to celebrate Christmas in a way that is best right now. Thanks so much for the update!
                              Last edited by funnylegs4; 12-19-2019, 10:09 AM.
                              Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                              My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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                                :) Merry Christmas to both of you and to your personal angels. Everyday you are in my thoughts and prayers. Love, Jeanie :)

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