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Thread: Jim's Journey

  1. #241
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    Unhappy When Treatment Makes Life Worse

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

    Radiation treatment is creeping up on Jim now. He has bouts of heavy coughing, to the point that he feels like he'll vomit, but doesn't. He produces gunk, some "dirty," but no blood. The retching and hacking is producing pain in his lower back. He is fatigued beyond any fatigue he's had before, with no energy.

    He fell asleep last night before he could have dinner, and when he woke up at 11 p.m., he wasn't hungry. He had 1/2 a Boomin' Berry bagel and a cup of tea. He'd been nursing an Orgain shake as a chaser. Then, he was back and forth all night to the toilet into this morning.

    Breathing treatments help, but they are needed more frequently. After a heavy coughing episode this afternoon, I gave him 5 mg of cough syrup with codeine. He fell asleep and has been sleeping soundly for several hours.

    CANCELLED DENTIST

    I called our dentist and cancelled his appointment for tomorrow. He's been sleeping most of the day, so I haven't called Dr. S to tell him that Jim's symptoms seem to correlate to those he told us might occur. The radiation is working now, doing its job, and this is the aftermath.

    I texted John to let him know that Jim's appointment was cancelled. Today is John's birthday. We have gifts for him and his wife, whose birthday was 2 weeks ago. Plus, I ordered extra cases of water to be delivered to us last week, so that we could give John several cases to share with his guests and his family. I also wanted to give them a bunch of freshly picked juice oranges (our most famous gift to every visitor). But, the shipping has been delayed for some reason. Weather perhaps.

    John and I tentatively planned on him visiting on Wednesday afternoon. We'll just have to see how Jim does. Even if he can't stay awake for a visit, John can pick up the gifts and the water via the garage.

    FOOD

    I'm not accomplishing much housework, yardwork, cooking, or laundry these past few days. The Shepherd's Pie tided us over for several days.

    Jim was able to eat a pancake with raisins, diced peaches in juice, and 1/2 banana today. Then, he felt gaseous, but he didn't want to take a Tums on top of his cough syrup. Without his dentures, he sucks in more air, especially when he sleeps with his mouth open. Hence, gas. Plus, he has intestinal issues.

    We have all of this delicious food in the fridge and pantry, but Jim has no appetite, and I have no time to prepare anything. I was going to order from Instacart today to get some Indian simmer sauces to put over fresh sauteed veggies and rice, but Jim was sleeping, so I delayed that until tomorrow. Even then, I'm not sure that he can handle mild Indian spices. He has a craving for it, and I am a lousy chef with Indian recipes. This is the best I can do.

    We have a Tofurky ham and a Field Roast Celebration Roast in the Freezer for Thanksgiving. I have organic stuffing mix. Lots of fresh veggies. Veggie gravy mix. Since Jim won't have his dentures the Roast is the better option. But he has to be awake and able to eat it, and I have to have all day to cook it.

    It may end up being soup and football, when Jim's awake.

    ASCITES

    Of course, Ascites remains a problem. Jim wants to believe it will go away. It won't, and it breaks my heart every time he says this. He's talking about paracentesis again, but we've been over this many times that the fluid will come back within 24 hours. It doesn't accomplish anything lasting at all.

    Dr. K will place the order, John will take us, and Jim can go through it again with me by his side. But to what avail? And potential risk of infection around the injection/tube site?

    I'm trying not to panic, and we're both praying that all of this will get better instead of worse.

    Thank you all for your love, prayers, support, and constant friendship. We love you and pray for you and your loved ones every day.

    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. #242
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    Rose, Leaving the ascites unchecked puts Jim at risk for spontaneous bacterial peritonitis, which is exactly as it sounds. It is absolutely typical for people with ascites to have paracentesis frequently and indefinitely for symptom control/comfort and prevention of the above mentioned peritonitis.

    It is possible to have a drain placed that can be emptied at home. Perhaps that would be worth exploring. I’ve read of several stage 4 breast cancer women who have the drain and recently read about a two year old who had one for about a month following a liver crisis secondary to chemo complications.

    In any case, sounds like a check in with the doc may be of use.

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  5. #243
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    Thumbs up

    ((((((callyflower)))))) ~

    Thank you so very much for sharing this with me. Why haven't any of the professionals in Jim's case told us this potential risk without paracentesis periodically?

    I had to convince Dr. K to order the first drainage. He replied that I "made a convincing case." So, I've come to believe that it isn't a procedure that should be done capriciously or without great justification.

    How often can it be done safely? How often should it be done? Who do I ask for these questions? Who specializes in Ascites?

    Nancy said that home drainage is probably possible, but that continuous drainage of the gut leaves it without the fluid it needs.

    How much water/fluid should Jim have in 24 hours? How do we know if he has too much or too little?

    Am I supposed to know all of this stuff on my own?

    If it weren't for you, callyflower, I would be adrift and have no idea which way to turn.

    I will craft an email to Dr. K and request paracentesis asap. Of course, it is a holiday week, where everything closes to give thanks. And scarf up all the Black Friday Deals!

    Ah, but a memory ... in 2002, the day after Thanksgiving, I took Michael, via ambulance to the hospital to have his G Tube changed. The GI, who performed the procedure in the GI lab was our beloved Dr. C. After Jon received his G Tube in 2009, Dr. C visited our home every year to change Jon's G Tube.

    And, back to reality, I'm off to write an email to Dr. K.

    Thank you so much, callyflower. May you and your family have a lovely holiday together. We give thanks for your continuing guidance and wisdom.

    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. #244
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    Rose, it is not unheard of to need paracentesis on a weekly basis. Each case is unique, of course.

    I respectfully disagree with Nancy’s statement. Yes, we all have small amounts of fluid in our abdominal cavities which keeps our guts from sticking and rubbing against themselves, but ascitic fluid is never normal. Ascites is the product of a bodily malfunction. I suspect, in Jim’s case, that he has liver dysfunction, since some of his labs are wonky and there has been no mass detected by scans thus far.

    Since Dr K is the main doctor, perhaps it would be helpful to ask for a referral to a specialist with lots of experience with ascites. Having someone review Jim’s records and explain exactly what is happening and what the best course of treatment going forward might help a lot. The diuretics have done little, so I suspect dietary restrictions would not be too effective either. Frankly, at this point Jim needs to eat whenever and whatever his little heart desires. Quality of life is paramount.

    The holiday makes things inconvenient, but not impossible. Just do your best to get heard.

    If I may make some suggestions.... Try to have Jim take his diuretic first thing in the morning. It works best with the natural body wake/sleep cycle. Also, perhaps the THC would be better taken at night, when Jim needs to sleep. Use CBD in the daytime. Also, a humidifier may make the coughing less intense.

    Finally, happy Thanksgiving. We will be having a small one as my husband (PT) is swamped with work and my daughter is trying to stay afloat in a sea of parasites! She is taking parasitology right now and has to learn SO much for upcoming tests. I have begun volunteering for a hospice, and am content to keep things low key this year.

    Hugs,

    C

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  9. #245
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    hey rose ,

    I was going to order from Instacart today to get some Indian simmer sauces to put over fresh sauteed veggies and rice, but Jim was sleeping, so I delayed that until tomorrow. Even then, I'm not sure that he can handle mild Indian spices. He has a craving for it, and I am a lousy chef with Indian recipes. This is the best I can do.
    i love indian food, also, but i tend to like mine spicy.

    i've seen simmer sauces where i shop. usually they have different levels of spiciness. if something i cook turns out a bit too spicy, i always have canned coconut milk around. it's used a lot in indian cooking, as you know, so it really works well to tone down spiciness.

    i hope you find this hint helpful. maybe if jim is really craving something, he might eat more?

    sending prayers and peace to you both,
    jeannie
    WE ARE BT!
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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  11. #246
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    My dear Rose,
    I am so sorry to hear that Jim is suffering with this fluid and with the side effects of radiation. It sounds like CallyFlower has some great advice and I hope Dr. K listens to you and that something can be done to relieve Jim's suffering (and yours). It just sounds miserable and so so exhausting for you both. I guess the good news is that the radiation is doing its work as you said, but it is so harsh. I pray that Jim will feel much better soon and that he gets a new sense of energy for walking and eating the English foods he enjoys so much. I was thinking that one easy recipe is to roast chunks of cauliflower (so nutty and delicious after roasting) and then mix in a pan with a jar of butter chicken sauce. Serve over rice. Indian but mild and veggie. I hope today was a bit better. I am thinking of you all the time and praying for an ease to all this. Love, Donna xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  13. #247
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    Thumbs up Happy


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

    Thank you all for your support.

    callyflower ~

    HOLIDAY HELP

    Yesterday, I received a reply from Dr. Kís assistant. Dr. K is out of the office this week. The on call doc is the dreaded Dr. P. Dr. P advised me to take Jim to the ER for evaluation. Typical of her lack of caring.

    In my email to Dr. K, I explained that Jim's symptoms correlate to Dr. Sís description, coughing and fatigue. Then, I asked Dr. K to order paracentesis. He doesnít need to go to the ER.

    Our experience is that holidays are the worst time to have any kind of medical problem. It may not be impossible, but itís very close to it.

    MEDS

    Jim is now taking his Lasix in the morning. Previously, he took it in the afternoon, because he wanted to space it out with his other meds. Also, when he had radiation late afternoon for 15 days, he didnít take it until we got home. That made his nights even more active. But he feared taking it earlier, because heíd need to go to the bathroom while on the table.

    He was able to sleep a little better last night taking the Lasix earlier, so Iím hoping that it will continue to be so. Although, today, he took it at 12:30 p.m., because he said, ďIím peeing fine and didnít think I needed it yet.Ē I tried to explain to him that that isnít the point.

    I have told him repeatedly to take his THC at night, but sometimes, Jim just wants to relax, which I can understand completely. He takes his CBD day and night. I think heís taking 60 mg of CBD/day now.

    PLAN

    Next week, I will email Dr. K to ask for the paracentesis order and to refer Jim to our wonderful GI. It makes the most sense that Jim should see him to sort out his GI issues, including Ascites. If Dr. C doesnít feel he can help Jim, he should know someone, who could.

    The Ascites is angering Jim more than the cancer now. Itís uncomfortable, and it drives him nuts. I absolutely understand how he feels. Iím doing everything I can to help him.

    I hope that you and your husband and daughter enjoy your low key Thanksgiving tomorrow. Sometimes low key is perfect.

    tic chick ~

    FOOD

    Thank you for your suggestion.

    We have coconut milk as our dairy alternative. And the simmer sauces I bought are all mild and made with coconut milk and cream. I also bought a korma sauce, which Jim loves, which is very creamy.

    Jim has digestive issues, diverticulitis, colon wall thickening, and the Ascites really wreaks havoc on his ability to eat, digest and not feel full after a few bites. Spicy food may aggravate all of this, even though he is craving it. He isnít wearing his dentures, so he doesnít chew properly, and he sleeps with his mouth open, which creates gas.

    Iím ready to make anything for him, but he doesnít want me to go to the effort of making a nice meal, which he ends up being unable to eat, or which may make him feel worse.

    He wants to eat more, he is just so full of fluid and gas that he doesnít have room for food.

    He has been drinking an Orgain shake today, so at least heís getting nutrition.

    I hope you have a lovely Thanksgiving.

    Donna ~

    Thank you for your recipe. Jim loves cauliflower, but it is also gas-producing.

    MORE FOOD

    I have so many different kinds of meals to make for Jim, which he loves: the famous Shepherdís Pie, tacos, burritos, Indian dishes, spaghetti with Field Roast sausages, potato salad and Tofurky beer brats, a Field Roast Celebration Roast and a Tofurky Ham Roast in the freezer, one meant for tomorrowís meal one for Christmas, but heís not inclined to want to eat that. I have organic savory dressing, packets of veggie gravy mix (which is hard to find), fresh veggies.

    Last night, he ate a grilled veggie ham and cheese sandwich and a small bowl of cashew carrot ginger creamy soup (Pacific organic boxed soup). Weíve never had this flavor before, and he loved it. During the night, he had a cup of tea and one Simple Mills gluten free soft chocolate chip and coconut cookie.

    About 24 hours later, he had his first meal, which was again, ham and cheese grilled sandwich and the same soup.

    Iím just so grateful when he eats anything.

    SHOWER

    Iíve lost count of how long it has been since Jim showered. Heís been taking ďspit bathsĒ in the bathroom with a washcloth, soap and water. Yesterday, he asked me to help him have a bath tomorrow (today). He said that he wished that he could soak in a tub, but that is not possible. Our tubs are hard, and he is bony. And getting up and down Ö too risky.

    While I was cleaning upstairs today, I heard the downstairs shower go on. I ran down, and there was Jim ready to go into the shower! ďNot without me here! Never without me here!Ē

    Jim managed to get into the shower, and it felt wonderful. The hot water on his always freezing body, the feeling of being clean and fresh. Fresh pajamas.

    WOUNDS

    I noted a large red patch on Jimís left shank on his back. I circled it with my finger, and Jim said, ďThatís exactly where the radiation was.Ē

    He said it didnít itch or burn, which was good. I grabbed some Body Shop Hemp cream, which has worked wonders for us for all kinds of wounds. Weíll keep an eye on that and change treatments as we go along.

    On his right rear cheek, he has a small Stage 1 ulcer. Itís pinpoint with a bit of redness around it. I slathered it with Calmoseptine cream for starters, and weíll check it daily.

    How did he get this? From putting his legs up on a wedge, with a pillow under his knees, and a wedge at his head. This is the position, which Nancy told him would help reduce some of his Ascites fluid. It worked a little, but he has been in that position for too long. I told him this several days ago, but he insisted he wanted to keep this position to work on his Ascites.

    He isnít using the alternating pressure mattress, because the firm cells became too firm, even on the lowest setting.

    So, I moved the wedge to the other side of his bed, and now he is laying flat on the bed, which is more comfortable for him. He wonders why his legs ache. Because they have been elevated for too long.

    JOHNíS VISIT

    Jim was up to a visit today, so John stopped by for an hour to chat. We filled him in on how Jim has been feeling.

    His wife had been in No. Cal working for 4 days, flew home today, and is making dinner for 12 guests tomorrow. John offered to bring over his wifeís famous made from scratch dressing/stuffing and cream corn. He knew we couldnít come over, so he didnít offer to pick us up and take us to his house for the festivities. He has many times in the past.

    When John walked in, I reminded him that on this day last year, he came over to move Jon to his recliner, so we could put on Jonís new alternating pressure mattress system. That is when John took those beautiful photos of Jonathan, which we treasure.

    The holidays are impossible this year, and Iím rummaging through my coping tools box to find anything to help me muddle my way through this season. Itís unavoidable, because the holidays are everywhere we turn.

    The End.

    Or, Thatís Enough.

    Thank you all for reading this lengthy post. I felt the need to address all of your suggestions and concerns.

    We love you and give thanks for the blessing you are in our lives. We wish you all a lovely Thanksgiving celebration, however you spend it, please know that you and your loved ones are in our prayers.

    Love & Light,



    Rose

    Last edited by Earth Mother 2 Angels; 11-27-2019 at 06:44 PM.
    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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  15. #248
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    Rose, do you think Jim would do better with his meds if you put them in a med organizer? You could set it up with him once a week and then it would be easy to casually check on him, too.

    Jim is on a pretty low dose of CBD. My daughter recently began using CBD under Texas’ new, very limited MMJ law. She was prescribed 100 mgs right out of the box. It makes a big difference in her anxiety and mood stability. I understand Jim’s need for relaxation. Have you all checked out the transdermal cannabis patches? That would keep an even level in the body and might prevent over sedation.

    Just know that if Jim gets in a bad place, the ER can indeed do a paracentesis. Of course that’s not ideal, but sometimes that’s the only way to get relief. I recently watched a YouTube vid of one being done in ER. They filled 20 bottles and apparently did that every week or two. Unbelievable that the body can seemingly make fluid out of air!

    Here’s hoping for a peaceful day tomorrow.
    Last edited by callyflower; 11-28-2019 at 06:15 AM.

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  17. #249
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    CallyFlower, your suggestions are full of caring and experience - at least it's reassuring that ER is a last resort if the ascites gets beyond the pale over the weekend. Rose, you don't need to answer our suggestions my dear. Honestly. It's just us trying to be helpful - this is our way of showing you we care and love you. Maybe this will be the Thanksgiving without dinner. It will be hand holding and cups of tea and sandwiches. Memories sharing. I wish you and Jim a Happy Thanksgiving, Rose, whatever it looks like for you this year. And I am very grateful for your friendship. 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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  19. #250
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    As Donna said, no reply is necessary to all that is said. We don't want to feel that we are more of a burden than a help.

    I just wanted to say that I am thinking of you and Jim on this day. I just hope that both of you know peace and joy and that Jim is free of suffering. I believe that all of us on BT and all your friends will have both of you on our minds and in our prayers today.
    Virginia

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