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Thread: Jim's Journey

  1. #331
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    Default Thank You!

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

    callyflower, Mary Grace, and Donna ~

    Thank you all so very much. I'm in tears too right now.

    I've just communicated with two friends. One was about the passing of another dear friend. The other was to help my friend as she battles ALS.

    And then I read your lovely posts, and well ... it's a lot to take in at one time.

    If it were not for the love, prayers and support of our friends, I don't know where we would be right now. It's a two way street, and we are so grateful for everything coming our way from all of you. I appreciate the internet as an avenue for me to share our experiences, learn from others, and establish long lasting true friendships. We may never meet in person, face to face, but our hearts are joined together.

    I feel that we get so much more than we give. Thank you all so very much.

    BRIEF UPDATE

    Jim's feet/ankle swelling is better. He's keeping his feet elevated in bed and exercising. His vitals are all very good. Tumor/rib pain requiring a T/C today. He held out for too long. But that's how he is.

    I'm watching for dehydration with the increased Lasix.

    We had a huge brunch today after his nap. Dinner approaches.

    I emailed Dr. K today, so he'll have that in the morning when he returns to his office. I told him everything about Jim. I asked about giving Jim morphine. This tumor/rib pain is really doing a number on him. Nancy is in favor of morphine, so we'll see what Dr. K says. It should be "yes, I'll prescribe it."

    Nancy will do a head to toe assessment of Jim during her visit. She is always thorough, and we'll make sure she sees everything.

    Thank you all so very much for loving and praying for us, for sending us all of your healing thoughts and positive energy, and for allowing us to spill out our lives to you for the past 2 decades.

    Abundant blessings upon all of 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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  3. #332
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    Don’t discount the fentanyl patch. It is applied once every three days, so there will be little chance for the pain to get ahead of him. If there is breakthrough pain, other meds can be used and smaller doses are generally needed.

    It would be a good idea to start a daily stool softener/laxative regime. He WILL get constipated once regular doses of narcotics begin. Managing with fibrous food and fluids will likely not be enough.

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  5. #333
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    ((((((Hugs to All)))))) ~

    callyflower ~

    Thank you for the reminders about the Fentanyl patch and constipation. We'll discuss both with Nancy tomorrow.

    Jim's pain was a bit debilitating this morning. He calls it his "groin area," and the location is pelvic, at the bottom of his huge gut, on the left side (tumor side). I'm concerned about it being his prostate or that 10 mm site in his bladder. When I try to determine the source of the pain, Jim responds, "What difference does it make? I'm on my way out. Nothing left to treat me."

    Yesterday, he spoke on the phone for about 10 minutes to his MMJ physician to renew his recommendation/card. This is the 4th year he's gone through this process with the same doctor. He asked Jim several questions about his cancer treatments and his overall health and what benefits he thinks he's receiving from MMJ. He probably has legal obligations to ask these questions, because I'm sure he'd provide the rec/card without them. But, he also asked questions out of concern for Jim.

    When he asked Jim what was ahead for him this year, Jim replied, "Nothing, doctor. I've run out of treatment options. I'm on my way out."

    Later, I asked him if he would stop saying that he's on his way out. Jim laughed, "Well, I am, so I'm just being honest." He looked up at me, took my hand, and said, "It hurts you to hear me say that. I'm sorry. I'll stop."

    Rest in bed, with a huge salad for lunch using Jon's overbed tray, and some Tylenol with Codeine, and the pain has finally resolved.

    I asked Jim what he wants in the way of pain meds, and he answered, "Whatever you, Dr. K, and Nancy think is best for me. I'm okay with the Codeine, but maybe I need something different. You know that I don't like taking meds (meaning pharmaceuticals), but I know that I'm at the point where I have to take them to help me get through this."

    He hasn't taken his Lasix today, because it was too painful for him to sit up, let alone walk to the bathroom. As the pain subsided, he's been going to the bathroom.

    The edema in his feet and ankles is gone! I don't understand it. But his ankles and feet are back to normal. I removed the bolster elevating his feet, just in case that would ease the pain in his pelvis. It's better, so perhaps that worked.

    Today, Jim said the sweetest words a caregiver can ever hear, "You make me feel comfortable. You work so hard to make me feel comfortable. Even the way you pull up my sheet and blankets. And you figure out ways to make me more comfortable with positioning and pillows. When I'm not in pain, I'm comfortable, because of you. And when I'm in pain, I feel better, because of you. Thank you, honey."

    He's raving about the meals I create for us, praising my cleaning and laundry efforts, reminding me to water our few, pitiful houseplants. And so many times every day and night, Jim says, "Honey, I love you."

    In our unique wedding ceremony, Jim walked down the aisle before I did, and the song he chose was: "If Tomorrow Never Comes" by Garth Brooks. Grab your tissues.

    https://www.youtube.com/watch?v=QDBJR8C7luk

    A waterfall of tears pouring out of me now ...

    Dried my tears and checked on Jim, and he announced that he had a lovely, normal BM! Well, YAY!!!!

    The pain in his pelvic area seems much better now too, so perhaps that's what we're dealing with there. Constipation, colitis, colon wall thickening, diverticulitus, all of which he has.

    He is again ambulatory, without pain, and ready to take a nap. Relaxed, finally.

    Now, we'll see where tonight and tomorrow take us.

    Thank you for your wisdom and guidance, callyflower, and thank you all for your love, prayers, and support of us.

    We love you all 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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  7. #334
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    Seems that the lasix boost did its job. Yay! The pain could be so many things...even referred pain from somewhere else.

    As upsetting as it is for you to hear Jim’s attitude about his current lot in life, I sure do admire him for his frankness. It almost sounds as if he needs to hear it in order to wrap his mind around the situation.

    Do you feel it is time to revisit the hospice option? You would get more support (chaplain, aides, increasing nursing visits,etc). It might help both of you get in a good head space to address the coming changes. It would also mean no more scans, tests, and specialist visits. Lots to consider.

    Hope tomorrow goes better than today.

    C
    Last edited by callyflower; 01-06-2020 at 07:14 PM.

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  9. #335
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    My dear Rose, Jim and you are being so brave and so loving towards each other. Yes, his words to you made my heart melt! His thank yous.

    I'm so glad that the swelling down and that the pain has eased. I think Cally is right - that saying the words out loud help to transition, to literally turn his around and look at his future, beginning to accept it. If only we could all do this before a cancer diagnosis - I think this is what Atul Gawande asked us to do in his book, Being Mortal. Jim's body is so fragile now and mysterious in the way symptoms come and go. But he is right that you are so acutely aware of his body and feelings - you are watching and listening to him so closely. That is a great gift to him because it results in his comfort and that is all any of us can ask for when we are ill and suffering... the abiding love and attention of the person we are closest to. You are truly Jim's angel, Rose. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  11. #336
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    ((((((Hugs to All)))))) ~

    callyflower ~

    PAIN, URINE AND BOWELS

    I also considered referred pain as a cause, particularly because his pain is all on the left side, where his tumor is located.

    Nancy said today that the pain could be from the bowel. She has personal knowledge about this topic. She suggested Miralax, but we're inclined to stick with MOM, as Miralax gave Jonathan and Michael excessive gas. It also didn't regulate their bowels. I'm thinking too of the Yakima paste you mentioned, as I have senna, prunes and raisins.

    He did feel better yesterday, after his good BM. But he isn't going enough to clear out his bowels. The results of every CT scan he's ever had contained remarks about his backed up bowels, even when he had large normal movements everyday.

    She also speculated that it could be bladder spasms. While she was here, Jim went to the bathroom. He started hollering, so I ran to him, and she followed. A trace of blood in the toilet, as he peed clear urine.

    He didn't take his Lasix yesterday, because it was so difficult for him to go to the bathroom or even sit on the side of the bed. I encouraged him to take it, but it's his body and his choice. He took it this morning about 9 a.m. Second dose is due soon.

    PAIN MEDS

    Nancy is on board with the Fentanyl patch and/or morphine.

    Dr. K's response to me was that morphine is a very strong drug, and it would make Jim even sleepier than he is now. He said Jim's dose of Codeine is very small, so he can increase it, if he needs to do that.

    Nancy said that morphine actually helps with breathing, where codeine can reduce respirations. Jim said that he is okay with the codeine but not adverse to trying something else, because he trusts Nancy implicitly. She has about 35 years of experience treating cancer patients. She knows a lot about pain management.

    I asked Nancy to discuss Jim's pain med choices with Dr. K. She is on vacation now for a week, but next week, I hope she'll have a chance to contact him.

    HOSPICE

    I asked Jim today whether he feels he's ready for hospice, and he responded, "No. I'm not even close to that now. I'm hurting, and these things are happening, but I can still manage to get up, sit up, eat, enjoy a Guinness now and then. I don't think it's time. Do you?"

    I shook my head, "No. But when it is ..."

    "Then I'll be ready."

    Today, Jim asked Nancy what her retired husband does during the day, and she said that he putters around, takes care of their dog, etc. Jim said, "I need a pal, Nancy. An old man, like me, to chat with, play cards, laugh with."

    I grinned. "He's asking for a play date with your husband, Nancy."

    "Oh! Okay! Sure, I'll mention it to him. He always asks about you."

    Even though Jim talks about being "on my way out," he also continually looks toward the future with hope and a desire to keep living. He wants to live while he's here, while he can still enjoy living.

    Nancy noted that Jim's birthday is coming up this month, and she asked him what he wanted for his birthday.

    "Another birthday in 2021."

    Thank you so much for your advice and guidance, your support and friendship, callyflower. I need to keep thinking about all of these things to prepare myself too. He's ready. He knows he's going to see Jonathan and Michael and all of our loved ones, and he is joyful about that. He just doesn't want to leave me.

    Donna ~

    This afternoon, I told Jim how brave he is, and he sloughed it off. I reminded him that I know what constitutes bravery very well as Jonathan's and Michael's mother. "You are every bit as brave as they are. You have had so much courage to do all that you've done in the last 4 years." I pointed to his port and his tummy, and then I just said, "The list is endless, honey. And you have been so incredibly strong and positive through all of it. You're amazing."

    We were watching TMC movies today, and every time I looked over at Jim, he was looking at me. For how long, I don't know, but he just sits or lays there and looks at me. We smile, and I ask him if he's okay, and he says, "Yes, I just love you."

    He thanks me for everything I do for him. EVERYTHING.

    Who in the world wouldn't want that kind of love?

    How blessed we are to have each other, to have our sons, and our dear loved ones supporting and caring for us.

    Thank you so much, Donna, for your continuing love and support.

    We thank you all and pray for all of 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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  13. #337
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    Hmmm, that is disappointing about the pain meds. Morphine does improve the breathing. Mom used nebulized morphine every 4 hours and it helped her to breathe more comfortably and when the CHF took over it allowed her not to feel the air hunger. She also used the fentanyl patch and wasn’t sleepy from it at all after the first couple of days. The constant flow rather than intermittent dosing made the difference.

    Please remember that hospice is not a service to “put down” sick people. It is simply a program for folks who have a life threatening illness with the potential to take ones life within 6 months. Many people actually have an improvement in the quality of life once the pain is properly managed and “comfort care” meds are on board (bowel meds, anxiety meds, etc). A lot of living gets done during the hospice process. Of course I am partial to hospice since I am volunteering for a large one in Fort Worth right now. I do a lot of phone calls with the families and I have yet to speak to any family who wasn’t so pleased with the process.

    Anyway, enough talk about that.

    The miralax might be good to do a big clean out. Another choice might be lactulose. Two of my cats use that right now and it does a good job of making large,easy to pass stools for them. Leave it to me to have not one, but two constipated cats! They are brother and sister pedigreed cats (rescues) and I think they have genetic issues. I love them though.

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  15. #338
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    ((((((Hugs to All)))))) ~

    callyflower ~

    How wonderful that your are volunteering in Hospice! I do recall you mentioning this in another post. Your patients and their families are blessed to have your love and care.

    One of the reasons why I hesitate for Jim to go into Hospice is because Jim will lose Nancy as his nurse. I think that this would be difficult for Jim, because he loves and trusts Nancy, as do I, of course, and she knows everything there is to know about us, our family, Jonathan, our life. No one could be more comforting and loving than Nancy is for us right now.

    Nancy was a Hospice Nurse for several years with our agency. So, essentially, she is providing Jim with hospice care now. She is ready to discuss Jim's pain meds with Dr. K. She is on top of his Ascites, edema, and conveniently is visiting whenever Jim decides to pee blood. She's right there in the bathroom assessing it and Jim's pain. She is always a text or phone call away for us, and she gives us extra personal attention, because she and we are family.

    If Jim needs IV via his portal, she's got that covered. Infusion, covered. Port draws, covered every month or whenever ordered.

    As you can imagine, I've met hundreds, maybe thousands of nurses in every imaginable medical setting throughout the past 50 years. None of them compare to Nancy.

    Hospice may be in the wings, but for now we need Nancy. I mean, WE, because I need her too. She and I are grieving together in our way and holding each other up. We miss Jonathan, and we know we're going to miss Jim. I can't establish that connection with a nurse, who is a stranger to us.

    Miralax and especially Lactulose gave Jonathan and Michael horrible gas. Jim already has a problem with gas, so we're reluctant to try those with him. Most laxatives and stool softeners have polyethelene glycol as an ingredient. That stuff is wicked. We have MOM, which has been our standby for our boys and now for Jim for decades.

    Today, Jim wasn't interested in eating, because he needs a good BM. I talked him into a fruit bowl, with chopped apples, mango, raisins, prunes and diced peaches in juice. It took him two rounds between naps, but he ate all of it.

    I've been promoting the MOM idea with him a few times today, and he says things like, "I think I feel movement down there, maybe this time it will happen." Then, he returns to napping.

    Here's another reason why we can't have a "team" of helpers or visitors or chaplains or ... visiting. Jim is either sleeping, going to the bathroom, eating, going to the bathroom, sleeping, etc. I can barely get a time for Nancy's visits, or John to help us with stuff around the house, or Jim's appointments, or plumbers and mold remediation. So, having more people to schedule for whatever reason adds to my workload.

    In between Jim's napping, eating, bathroom, etc., I have to fit in laundry, cooking, cleaning, etc. It was one of those mornings today, where Jim needed to sleep and pee, and during his intermittent awake moments, I gathered trash and brought in the boxes delivered to our front door. I noticed all of the cobwebs on our front doors, and the covered entry rafters. So, I grabbed a broom and swept the stucco, the rafters, the doors, the walkway.

    Jim called out to me, "What are you doing, honey? Are you okay?"

    I peaked inside the front door and told him that I was sweeping and that I would be done in a couple of minutes, so he could go back to sleep. He was awake, when I went out there.

    Why is it that no one ever gets any sleep or rest in a hospital? Because someone is interrupting them every 10 minutes, a therapist, a nurse, a doctor, interns on rounds, the housekeeper, the turning staff, an aide to take vitals, x-ray techs, etc.

    At home, we get rest, and that is my primary objective and always has been. It may be lonely sometimes, but it beats being in the hospital and sleep deprived.

    Twenty years ago, we disconnected our doorbell, because it was located in Michael's room, and he was ill and sleeping on and off and seizing. Jim was also trying to sleep in the daytime, as he had the night shift with our boys.

    At some point, I also put a sign on our front door, "Please Do Not Knock. Residents are Sleeping. Thank You."

    And, what did Jim do about a 1/2 hour after Nancy left yesterday? Slept. Interactions, as much as he wants them, wear him out.

    I didn't order from Instacart today, because I knew that Jim needed my full attention, which he has, and that he'd be napping about the time the groceries would be delivered. That's another thing that causes me stress, ironically.

    First, the stress of me having to go out in the van, walk around the store, carry heavy bags, taking me 2 or more hours, is gone thanks to Instacart.

    In it's place is "What time will Jim be awake, so I won't have to disturb him when the groceries get here?" He sleeps right next to the front door. Jim tells me not to worry about that. Oh, okay. Of course I worry about that! He needs to sleep!

    When Jim is sleeping, he isn't in pain. That is a blessing, so I cultivate it for him.

    We have to take each day as it comes and try to plan ahead somehow. Who knows how Jim will be feeling on February 10, when he's supposed to follow up with Dr. S about radiation? We have no idea now how he will be then.

    So, my current goal is to keep Jim comfortable and loved, to do what I can to conquer his constipation and pain, and depend upon Nancy and Dr. K to prescribe the appropriate medications/doses to help me in that endeavor.

    Your cats are also blessed to have you. We rescued a roaming Cocker Spaniel, who we adored for 11 years. Ironically, she had seizures. Sometimes our furry loved ones choose their humans for a reason.

    Thank you again for your thoughts and suggestions, callyflower, and God Bless You for the care you give to others in need.

    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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  17. #339
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    ((((((Hugs to All))))) ~

    I emailed Dr. K on the health portal today that we haven't received the results of Jim's blood work on 1/7/20, a week ago tomorrow.

    By the end of the day, the results were posted, and he wrote the following: "hemoglobin is 7.2, need to arrange for blood transfusion, rest of blood work is okay overall, but albumin is low, so try to give him more calories."

    Excuse me?

    We need to arrange for a blood transfusion? This report is almost a week old! Shouldn't a blood transfusion be arranged like the day after Dr. K sees the test results, not a week later? Or did Dr. K only see the test results today, because I called his attention to them with my email?

    Either way, not good.

    WBC, neutrophils, platelets, glucose, liver, are all improved or stable.

    Jim has been sleeping most of today. He did have a good breakfast, and then he fell asleep again. Who knows what his hemoglobin is today? I don't think we'll do a transfusion on a week old test. He'll have to have another blood draw to see if his level is better or worse.

    He's having a lot of rib and lower back pain. Some of that may be positioning, which we're trying all the time to remedy. But his rib is ridden with cancer and deteriorating, so that seems to be the problem, which we cannot solve.

    Dr. K recommended Norco, or as I've known it, Vicodin, as an option for Jim's Codiene. Nope. Not a good alternative. Vicodin is known to impair breathing.

    Everyone, who knows us/me, knows that I'm trying to feed Jim as much as he can manage. But his gut is enormous, full of fluid, he has constipation, albeit relieved a bit in the past few days on his own, eating prunes, raisins and dates, and his eyes are bigger than his tummy.

    Deja vu Jonathan and Michael. I've been here many times before.

    I've been hesitating scheduling Jim's CT and MRI, because I know he is simply not up to doing all of that right now, and I don't have confidence that he will get better or feel stronger and able to do it in a couple of weeks. When I told him that today, Jim said we'll make the appointment on the condition that we don't know how he will be on that date.

    Well, if he needs to go to the hospital between now and then for a blood transfusion, then I doubt he'll be up to these tests. His pain, even when mitigated by Codeine, is fierce when he moves, and laying on a hard surface may be more than he can bear. Right now, he isn't in pain, when he's in bed and sleeping. Sitting up is painful. Going to the bathroom is painful.

    We have to talk about how much he wants to go through and whether he feels that it's worth it to go through it, if the result is the same or hastens the result.

    Some deep and soulful conversation awaits us, when Jim wakes up. I also need to make dinner. He requested falafel in a pita with veggies.

    In case you haven't guessed, I'm not at all pleased with the news we received today from Dr. K. We need him to be on board with viable and helpful pain management options, as Nancy has suggested, and we need him not to tell us a week after a blood draw that Jim needs a blood transfusion.

    For crying out loud!

    Okay, I'm okay. I'll be fine, and Jim and I will discuss all of this when he is awake, and I can shovel a bunch of falafel down his throat. If Dr. K only knew what I go through every day to try to give Jim more calories and nutrition. That's fine. Put it all on me. Don't think about how difficult it is for Jim to eat any volume of food when his gut is stretched to the maximum with fluid.

    Blame me. Thanks. Doctor.

    Right now, I'm not handling this well. I'm venting here to get it out of my system. My demeanor with Jim will be much different. We have a Big Conversation before us.

    And, yes, I think about Jonathan and Michael and the decisions we made for them. A time arrives, when suffering overtakes heroic intervention, and the comfort and well being of our loved one is priority.

    I witness Jim's pain every day. I know what he goes through just to live one day. There's not so good, then, there's tolerable.

    While I know that Jim has a zest for life, I'm sure that he is holding on for me. I don't want him to be in pain, but he doesn't want to leave me.

    A constant tug and pull, so familiar to us.

    Thank you all for your love, prayers, support, advice, and positive, healing energy. We love you and send all of this back to 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. #340
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    All narcotics can depress respiratory status, especially if not taken appropriately. Vicodin is a very good drug. It is what I’ve used for all 4 of my cancer surgeries, my foot surgery, etc. I have myasthenia gravis, which affects my breathing. It has never been a problem, even when combined with IV morphine following my mastectomies. Try the first dose during the day, and watch him carefully.

    Have you considered a hospital bed for Jim? He is frail and in pain, and a hospital bed could afford him more positioning options.
    Last edited by callyflower; 01-13-2020 at 07:38 PM.

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