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Thread: Jim's Journey

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    Hoping all is well, also. No word from Rose in a couple of days, but maybe she is just worked down to her bare knuckles.
    Virginia


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    Thinking of you Rose and hoping all is well with you and Jim. Sending much love and prayers 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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    ((((((Hugs to All)))))) ~

    Thank you Donna, Mary Grace & Virginia for checking on us and sending us your love and prayers.

    Jimís appetite is waning as he fills up with fluid again. Itís been 3 weeks since his drainage.

    The hiccups have returned, along with coughing and vomiting a very small amount of fluid. It doesnít happen frequently, thankfully. Hiccups stop after a couple of spoonsful of applesauce. Coughing subsides with breathing treatments and his codeine cough syrup.

    He naps for hours in the daytime, and at night, heís watching TV. His old pattern of working the night shift, I guess. He will doze on and off at night, and then the pager beeps, and Iím up changing his britches, helping him pull himself up in bed, holding the vomit pail, etc.

    Last night, he remarked to me, ďYouíre becoming a pro at this.Ē I looked askance at him. He added, ďYou ARE a pro at this, of course, youíve been doing it all of your life.Ē

    A couple of days ago, he had a headache when he woke up, took a T/C, slept, was fine when he woke up again. Same thing happened this morning. Of course, I fear brain metastasis, but I also realize that he is malnourished, which can cause headaches.

    He asked me last week whether it would be okay to cancel his appointment with Dr. K on 3/23. Of course. He was afraid that he HAD to go, and he just isnít up to doing it. Then all of the C-virus media blitz hit, and he watched an expert on the TV news warn ďpeople over 65 should stay inside and away from public places and crowds.Ē

    Iím not worried just about the C-virus, because the flu is also rampant now. I donít know what weíll do about taking him in for another drainage, or whether he will even feel up to going through that again.

    His urine and bowel output are very good. But we have to step up the Lasix with a 20 mg dose in the evening. He pees in his britches, so he doesnít have to get up to use the urinal or the bathroom. We might contemplate using a condom cath again. Changing his britches in bed is strenuous for him, as he lifts up his hips and helps me. That is probably exercise for him. Still, a condom cath may be more comfortable. Weíll discuss that tonight.

    John visited late yesterday afternoon to realign the mattress. He wore our anti-flu mask. He put his arms under Jimís armpits to help Jim stand up from the bed and from the chairbed (where Jim sat, while John worked on the mattress). Jim isnít eating, so he's weak, of course. Jim said, ďWow! John, youíre strong!Ē

    John brought Jim a treat to try: a Blue Moon beer made with Valencia oranges. We poured a small amount in a glass for Jim to try. Later, after John left, I asked Jim what he thought of the beer. He confessed, ďI thought that was my glass of apple juice, so I poured the rest of the apple juice in the glass. When I sipped it, I realized it was the beer.Ē

    ďHey! You invented a new cocktail, dear!Ē I teased.

    In the kitchen, John and I chatted about the moldy sink cabinet. I told him that I havenít had a chance to address it, and he shook his head. ďI know. You donít have time to do much of anything, let alone these big jobs. And Jim doesnít need that going on right now either. When the time comes to have it done, Iíll be here for you.Ē

    As he does periodically, he urged me to get a will of some kind together. That weighs so heavy on my mind. I will at least follow the guidelines you gave me with that link, Donna, so we have something in writing.

    I have to attack the taxes, and as always I am dreading it, only more so than ever, because it is our last tax claiming Jonathan as a dependent, and I have to start reading all of the tax information to learn what I can/canít and must report.

    I try to accomplish housekeeping tasks, if I can be quiet and not disturb Jim. I canít vacuum, when heís sleeping. And the washer is in the garage just the other side of Jonís bedroom, and it makes noise periodically. Our front door needs a repair on the hinge, which John said he will do. Meanwhile opening and closing it really makes noise.

    This morning, I took my first walk in several days (lost count, canít rememeber Ö). Jim was awake, when I left and managing well. I brought his tea in and left for my walk. It was a short walk, 3/4 mi in 14 minutes, and I encountered several of my morning walkmates on the trail. Keeping our distance, smiling, waving, saying ďGood Morning! Beautiful day! Have a good one!Ē

    When I returned home, Jim was asleep. His tea was on the tray, cold. Itís like a sleeping potion for him, except he doesnít drink it when itís fresh! Same thing this afternoon. Itís uncanny.

    Itís Kirk Douglas day on TCM, so I watched several of Kirkís great flicks with Jim, and while I sat in the room watching Jim sleep. Kirk recently passed at the age of 103. And in all of these movies, he smoked like a chimney. Same with Robert Mitchum, who did pass at 79 from lung cancer.

    On Jimís tray, lined up are his tea, his apple juice, his Brita filtered water, and his Orgain Shake. I have been begging him to take a sip of Orgain with the other beverages. He obliged today with a couple of sips, then he fell asleep.

    He does enjoy the water now after the Brita filter. I donít know if thatís the placebo effect or if it does taste better. But as long as he enjoys it, thatís all that matters.

    Up to the minute, as Jim continues to snooze, that is us.

    We thank you all so very much for your love, prayers, support, and enduring friendship. Thank you for walking beside us on our journey and allowing us to walk beside you on yours. We pray for you and your loved ones and send you all our love and positive, healing energy.

    Abundant blessings upon all ~

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

    Last night, Jim asked for a cup of Amy's No Chick'n Noodle soup. I brought in the cup with the entire can of soup. Jim ate a few bites and said that he was full. That cup is in the fridge waiting.

    The mattress is out of alignment again. I don't think we can solve this problem permanently. It's frustrating.

    I napped for an hour in the evening, then changed Jim's britches, set him up with breathing treatments, fluids, applesauce, a tub of peaches, his meds, the works. He fell asleep after I brought in his fresh cup of tea. Per usual.

    About 1:00 a.m., I climbed into the futon nest in the living room, with the phone for paging on the coffee table, and everything in my reach to jump up at his call. At 3:30, I thought I heard him call, "Rose." I feared something was preventing him from reaching the phone to page me. I jumped out of bed and ran into the room. Jim looked at me, "Hi honey! Did you wake up?"

    "Didn't you just call me?"

    "No. I'm watching a movie. I'm okay. Go back to bed. You were dreaming."

    Back to bed, but not to sleep. Not long after, Jim began coughing, and I ran in to hand him the basin and turn on the breathing treatment. He didn't vomit. He took some fluids, including fresh tea. He ate some applesauce. Fell asleep.

    About 5 a.m. once again on the futon nest with my wonderful heating pad soothing my lower back and hips. I did not sleep, as I listened for Jim, and prayed for all of our loved ones.

    He was still asleep at 6:45, when I got up, and he slept until noon. We managed to change his britches, clean him up, use his ladder to pull him up in the bed, drink some Orgain, a cup of tea, Brita water, and applesauce, before he fell asleep again.

    We talked about the condom catheter, and he is not sure about it. We also discussed another drainage, and Jim said, "I definitely want to be drained again. I don't want to get that full, so I do want to increase the Lasix."

    The problem is timing between his sleeping.

    I have spent so much time in the room with Jim, while he's sleeping, and one of his favorite channels, Motor Trend, is on with no sound. Pretty soon, I can build us a car from scratch.

    At least I have accomplished a few things, which needed to be done for my own well being. I started removing the stuff I've been storing in Michael's and Jon's room today, while Jim slept. I took the time to find new places to store these things, removing the clutter in the sanctuary of our home, where we celebrate Jonathan and Michael.

    In the midst of chaos, I need to organize.

    And while we can't go forward with any large scale changes to our home, I am going to ask our weekly gardeners to go the extra mile to clean up our backyard, including Jonathan's and Michael's gardens. They have been neglected for too long. I need them to reflect the sacredness of our Angels, and this provides comfort to Jim and me. I truly desire to have this accomplished before Jonathan's First Angelversary on April 12, Easter Sunday.

    Meanwhile, the lone daffodil in our garden, beneath Jonathan's window, produced one magnificent flower. With gratitude, I snipped it to place in a vase between Jonathan's and Michael's Warrior Urns. When I showed it to Jim, he smiled. "They are with us."

    We Love You and pray for you and your loved ones. We thank you for your love, prayers, support, and friendship.

    Thank you for always making us feel better. This is the love we all need and share:

    https://www.youtube.com/watch?v=EFPTe9vOIkc

    Blessings on All ~

    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.


  6. #445
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    Rose, I am so sorry Jim seems to be getting weaker. I wish there was something to say or do.

    Thanks so much for the video. I thought it was so cute. Who would have thought that the parents would find that was going on.
    Virginia

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  8. #446
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    Hi Rose,
    Oh, it is so frustrating that Jim is filling up with fluid again and that he's just not able to take in the foods that you prepare. I'm not clear on how often Jim can manage going in for drainage. I am glad that you are finding help with the garden. Looking outside at your boys' memorial will heal your heart. At least it will be one uplifting thing. Thank goodness for the daffodil.

    I had a walk on the beach today - watching the pelicans and other sea birds dive for fish and soar over the water is so peaceful and interesting. I stood watching for a long time, Daisy by my side. Being near the sea is very good for the soul.

    I send you my love and prayers, Rose. Prayers going up now that Jim is having a good day today and will be able to eat something and have a good rest tonight. These ordinary things mean so much. 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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  10. #447
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    ((((((Hugs to All)))))) ~

    Donna ~

    Oh, I am so there with you on that beach beside the ocean, and yes, it is calming, peaceful, and powerful. Jim and I fantasize about going to the ocean one last time, and it hurts so much that we won't be able to do this Number One on our Bucket List for both of us.

    Eventually, our ashes will be blended with Jonathan's and Michael's ashes and made into a reef. Our reef will be released into the ocean and provide food for ocean life. We will forever, or as long as our planet lasts, be part of the ocean we love so much.

    Thank you for your prayers, and they were answered.

    Last night, Jim had one of his best nights in many days. He had slept a lot during the day, so he was awake on and off during the night. But he didn't page me once. I checked on him at 5:30, and he was sleeping comfortably.

    About an hour after I returned from my brief walk, Jim woke up. He said, "I think I want a burger on a bun, with lettuce, tomato, a bit of mayo, cheese, and a fried egg on top."

    I did a modified version of the Dance of Joy, and he grinned. So, he managed to eat half of a very large burger. I created the burger out of Yves crumble, with an egg yolk and seasoning. He said it was delicious. Given the amount of real food he has eaten in the past several days, this is a very big deal.

    He napped again. Then he woke up and ate a tub of applesauce. He's drinking water with pleasure now, so the Brita filter is working. He had an entire Orgain shake yesterday. He is peeing like two race horses.

    And, he wants to sit on the side of the bed and use the floor pedaler. He isn't giving up.

    I realized today that it has been a bit over 3 months since he finished his radiation treatments last November. Dr. S cautioned us that Jim would have lingering side effects from the radiation for up to a year. So, it is possible that the cough, at the very least, is connected to that treatment. The cough is what causes him to retch.

    Jim still has the bandage on his gut from his drainage. I don't know how often gut drainage can or should be done. I haven't been able to measure Jim's gut, because he isn't getting up out of bed. We haven't weighed him for the same reason.

    So, we are working on getting him stronger and more mobile. He is doing well with his arm strength using the bed ladder to pull himself up to a sitting position. If we can get him on the side of the bed to use the pedaler, that will strengthen his legs so he can stand and walk. But nutrition is at the core of all of that, so we have to keep working toward increasing his caloric intake, as well as protein.

    He's feeling better and stronger today, because he had his Orgain shake yesterday. Nutrition is everything. Sadly, I know a lot about malnutrition, as both Jonathan and Michael went through it. The guilt I felt/still feel that they were malnourished will never fade. I am their Mother. How could they be malnourished? So many reasons, all of which were beyond my control.

    So, here I am again. Working through this with Jim and remembering our sweet, precious Angels. And there is Jim, in Jonathan's bed, on his mattress, surrounded by all of Jonathan. And there am I, on the chairbed, watching over Jim as I watched over Jonathan.

    And for some reason, expiration dates on food seem to be April 12, and everywhere I look April 12 seems to appear. That is Jonathan's Angelversary. And Easter.

    Right now, a dear and very precious friend is in the hospital, and I can't be with her.

    I rejoice in Jim's renewed strength and interest in food. I pray that we can continue on this path to fatten him up so that he has the energy to exercise and regain some independence.

    Life is complicated.

    We love you all and thank you so much for your love, prayers, support and friendship. We pray for you and your loved ones every day.

    Donna, please give our love to Jim, Daisy, Nick, Natalie and your beautiful famiy. Thank you, dear friend.

    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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  12. #448
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    Rose, I was very pleased to see a positive post this morning. I'm not surprised that Jim is working at getting his strength up. Your home is filled with love and strength. When you mentioned going to the beach it made me thing of a show that Kathleen and I watch Planet Earth. Have you watched this? It is such a beautiful show and actually very relaxing to watch. The voiceover is relaxing and if you're at all tired it could put you to sleep LOL. (in a good way not boring jsut relaxing). Praying you both stay healthy and strong!
    Yesterday was Kathleen's surprise birthday party (her actual birthday was 3/4). It was a hit. We did a Superhero theme I'll try and post some pictures later... We payed for a "cameo" from Drake Bell, He's a star from an old Neckelodeon show Drake and Josh. She's obsessed with him and the show. He sent the video of him wishing her a happy birthday and she just about jumped out of her skin! A big hit.
    https://www.cameo.com/drakebell
    This is the link if you scoll down to By Family for Kathleen you can watch the video! We took a video of her watching it for the first time I'll try to upload that too. She was thrilled.

    After the party I sanitized the house and my body! We are so close to NYC where there a a lot of cases of the C-virus. Now there are actually cases locally! Getting very real! Actually 2 cases just 30 minutes away. And many in quarentine. It's getting very hard to get sanitizing cleaners. We may be soon looking at hunkering down in the house.
    Mary Grace

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  14. #449
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    ((((((Hugs to All)))))) ~

    Mary Grace ~

    HAPPY BIRTHDAY KATHLEEN!!

    What a great gift to have a personal greeting from Drake. (And no, I don't know who he is, but he is awfully cute.) I'd love to see the video of Kathleen watching Drake's greeting. Awww ... how wonderful for her.

    No, we haven't watched Planet Earth. It's soccer, golf, Motor Trend, and old movies here. I'll tell Jim about it, and we'll check it out. Anything to help us relax and sleep is appreciated.

    I'm sure that it is unnerving for you having C-virus in your area. I found some anti-viral masks on Amazon today and ordered a pack of 50 masks. They aren't the same as the one we've been using for several years, which is specially treated to protect the wearer from flu transmission. That mask is out of stock everywhere. The outside of the mask is treated to prevent the droplets from infiltrating the mask. It is far better protection from getting the virus than other basic face masks.

    I also tried to order the isolation gowns we use for Nancy and John. Out of stock everywhere. I finally found some and order a case of 50 gowns. I have 10 gowns right now, which should last awhile, since Nancy and John don't visit that often. I think I'll ask Nancy if she can get some to bring with her.

    We have been doing this for years, as you all know. We're not overreacting to the C-virus. We prepare for any kind of flu at any time. Or any other bug floating around. We are at high risk.

    I don't use hand sanitizers. I use alcohol swabs/wipes, which I carry in my purse, the van, my pockets. A quick wipe of both hands. If I run out of Lysol or Clorox disinfectant wipes, I use alcohol or hydrogen peroxide on a paper towel.

    MEANWHILE

    All was well with Jim until he fell asleep last night/early morning and woke up coughing and hiccuping at 3 a.m. He vomited a small amount of fluid and some mucous. He has heartburn and reflux now. Tums are not helping. We tried Carr's water crackers, which helped a little. He asked for cashew "ice cream," which helped a little. But the hiccups kept returning.

    He takes in a lot of air when he sleeps, especially without his dentures, as his mouth gapes open. He has promised to put his dentures in tonight.

    We discussed having him take a Nexium, which caused him some side effects last year. It was a last resort. About 2 minutes after he took it, he vomited. This time is was yesterday's burger and egg, I'm guessing, but very watery. I have no idea whether the Nexium was still in him, but I wasn't going to give him another dose.

    He fell asleep for awhile, woke up with hiccups, but rearranging him helped. He asked for Body Armor, thinking he needs to replenish his electrolytes. Water and tea.

    I texted Nancy for advice, but she hasn't returned my text. She's probably enjoying a Sunday with her family and has her phone turned off.

    The day has been better for Jim, as he has napped here and there for an hour or two. He's pulled himself up in the bed several times. His arms are getting stronger. His urine output is very good. His SATS dropped to 87 for awhile, so he was on 1.5 ltrs of O2 for about an hour. At 92 now without O2.

    Without tests, we can't really know what is going on. I thought about asking Jonathan's wonderful GI if he would make a house call for Jim. He has told us many times that he would help us any way he could. But, he'll probably say that tests are needed. Jim just isn't up to having them.

    And we're pretty nervous about being in a medical/hospital setting during this flu/C-virus season.

    So, we'll see how he does tonight and tomorrow. Hopefully Nancy will respond then. Maybe she can come over on Tuesday (her day on) to assess Jim.

    That's our story for now, and we're sticking to it.

    Thank you, Mary Grace, and all of our friends here, for your love, prayers, and continuing support. 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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    ((((((Hugs to All)))))) ~

    After all of yesterday's trauma, Jim had a good night. He fell asleep about midnight and woke up at 3 a.m., with no coughing, no hiccups, no vomiting. He didn't call me, kindly allowing me to sleep. He turned on the TV and watched an old movie.

    I got up about 6:30, and we discussed his night, I brought him tea and fresh Brita water.

    Then I took my walk. I wore my new Saucony Jazz shoes this morning! In 2009, Jonathan's ICU nurse told me that her Saucony Jazz walking shoes were the best she's ever worn. I've been wearing them since then. My walking shoes were so worn out. They're probably 6 years old, and I've walked many miles in them. I have another pair that I've also had that long, which are reserved for hospital/medical appointments.

    I don't want to be Oprah wearing the "wrong shoes!"

    https://www.youtube.com/watch?v=-zemAi-5teM

    Jim was asleep when I got home. He slept so soundly for 4 hours. It was wonderful for him.

    We've changed his britches 5 times today, and they are weighty. He is really peeing today, which is great, as it is reducing his Ascites fluid. I attribute today's flooding to the Body Armor sports drink he had yesterday/last night. Unlike Gatorade, it has some vitamins in it, and it is made with real fruit. I guess his electrolytes are back in balance now.

    He took another nap, and he just ate Imagine Organic Potato Leek Soup and two samosas with mango chutney. His first actual "meal" in about 40 hours.

    He did not want to take a Nexium today. He wanted to see whether he can tolerate this food. Initially, he was going to stay with liquids, but then the samosas came to his mind. So, we'll see what happens.

    While I didn't ask Nancy to visit tomorrow, her response to my text today was, "I have you down for a visit tomorrow just to check out Jim. What's a good time for you?"

    This is one of the many reasons why we love her. I may ask her to help me change Jim's sheets, with him in bed. He can turn himself, where Jonathan couldn't, but it would be nice to have two extra hands to do it.

    During my break from composing this post, Jim asked me for tea and a small cookie, with some cashew ice cream for later. I advised that he not push his luck. He said, "I won't."

    Then he apologized to me for looking out the window and rolling his eyes (I called him on it), when earlier, I suggested once again that he put his dentures in to eat chewable food and to serve as a barrier to air, when he's sleeping. I explained that I'm not trying to nag him, although it must seem that way to him. I love him and want him to be comfortable. Chewing properly is very important to proper digestion. And, his dentures do provide somewhat of a barrier to air. I added, "And, Nancy agrees with me and told you so."

    Jim replied that tomorrow, he will shave and put in his dentures. Aside from grooming and looking neat and tidy, which Jim has always done until recently, when he's too exhausted and weak, shaving has a practical purpose. Wiping his whiskers after he vomits is not as easy as wiping a clean chin.

    THANKFUL FOR MEDICARE

    At some point, when I recover from the shock, I will tally up the actual totals for Jim's radiation therapy. We've been receiving statements for a few days with the individual charges, what Medicare paid, what Plan B paid, and what we owe. What we owe is ZERO. NOTHING.

    Just averaging the totals for pages and pages of charges, I came up with an astounding amount. Then today, a new statement arrived. For the radiation treatment plan the charge was $97,000!!!! Medicare paid $5,000+.

    I'll give you a moment to let that sink in ...

    If all of this had happened before Jim turned 65 and was eligible for Medicare, we would either be bankrupt, or he would be dead or both. We didn't have insurance, because we had RA as a pre-existing condition. We went through a long period, when we couldn't even apply for health insurance for 5 years after having a diagnosis. Then it was 10 years. Automatic denial every time.

    Of course, we have all of the statements for Jim's cancer care since 2017. I may just sit down one day, when I have nothing else to do (far in the future, of course) and analyze the cost of Jim's cancer care. Then, I can write about it and submit it to some place, which might publish it, so that we can all see how much cancer costs.

    The monthly rental fees for his O2 concentrator, O2 tanks, and nebulizer are ridiculous. By now, Medicare could have purchased all of that equipment for less than the rental fees. But there is no regulation on these charges.

    And, in my list of the cost of Jim's cancer, I will include everything I have purchased for him since 2017. I've just ordered 100 briefs, because he needs changing so frequently. Under pads. The Rollator. The Bed Ladder. The alternating mattress he used on the futon nest. Masks and isolation gowns. Canulas. Nebulizer cups. Medicine cups. OTC remedies. It's a very long list.

    Cancer is expensive. Inordinately, unbelievably expensive. The cost of cancer is another hardship on the patient and the patient's loved ones. I can't imagine the plight of those patients, who do not have the Medicare coverage, which Jim and I have. Those, who are underinsured, as well as uninsured.

    I'm just so thankful that Jim has this coverage, and I pray that it will continue.

    So, for today, that is us.

    A storm is sweeping in now. Winds strong, clouds gathering. Rain is on the way. Everything is parched, so this is needed. But we pray for the burn areas, where flooding and mudslides can occur.

    As Oprah said: "Wellness means that all things are in balance ... but not at all times ..."

    Thank you all so very much for your love, prayers, support, and enduring friendship. We love you and pray for you and your loved ones, and we give thanks for the blessing you are in our lives.



    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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