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Thread: Jim Has A Fever. ER Bound

  1. #101
    Distinguished Community Member houghchrst's Avatar
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    I found this Rose, don't know if it is useful. https://charity.lovetoknow.com/chari...dical-supplies

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  3. #102
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Donna ~

    Jim's appointment with Dr. K is on Friday, 5/31 at noon Pacific. Thank you so much for your prayers.

    When John was here on Friday, we talked about Jim's appointment with Dr. K, and John said that he was available to transport. We can use the O2 tanks in the car and at the doctor's office/medical center. I'll have to get a supply of 2 more tanks from the vendor next week, as one tank lasts about 4 hours.

    I'm thinking about getting Jim a portable O2. I'll see whether we can get that through his DME supplier, when I call about the tanks. If not, I'll buy one.

    I ordered face masks for Jim, which he tried today. Both kinds are too small for his face, although they are labeled "adult" size. I'll ask the DME supplier for those too in XL. Jim's nasal cannulas just don't fit him properly, because of the shape of his nostrils.

    So, now I have 8 face masks to add to our growing list of supplies we don't need/can't use. I should research "Free Clinics" to see whether they accept donations of unused medical equipment. Yesterday, I found an unopened box of supplies containing three boxes of colostomy pouches, 10 per box.

    Jim is feeling a little stronger, and he's intentionally walking from bed to bathroom to pee as often as he can every day. He goes without O2 for a short period of time, but by the time he gets back to bed, he's huffing and puffing. He informed me that this is his "exercise." He's also saving me bending over to take off/put on his briefs.

    NUTRITION

    Jim's appetite is excellent. I'm keeping him well fed on organic food.

    Two things we've discussed: reducing his sugar intake and increasing his consumption of Orgain shakes. To both, he responds to me, "I know. I know."

    Today, I flat out told him that I don't want to hear "I know" any longer. "Since 'you know' then 'you know' that Orgain is the best thing you've got going for you along with CBD/THC. So, why aren't you drinking it every day? And drinking only half when you do drink it?"

    He told me to get the Orgain shake out for High Tea. As long as I also brought the TEA! He drank half of it. He'll drink the other half tonight, because I will bug him about it at bed time. I'm forcing him to do everything else. I'm going to force him to drink Orgain!

    WOUND CARE/DR. K VISIT

    I changed his wound dressing today, and the site looks wonderful! I am so grateful for this healing. The $90 alternating pressure mattress overlay is doing a great job. And the motor is practically silent. Jim says that he is very comfortable on the mattress. He's sleeping more and better now than he was, before he had it.

    Tuesday, Nancy will be here for Jim's port blood draw, wound evaluation, and to catch up. She didn't visit last week, as there wasn't a blood draw, and Jim was stable. And, he still is.

    It will be interesting to meet Dr. K, who might be surprised, when I show up with Jim. (I should warn him ... ).

    I want to say to him, "Well, a few days after Jim was released from the hospital, you called leaving a message that I should return Jim to the hospital. You were concerned about his recurring fever. He hasn't had a fever since (I'll have to check the chart for the date, but it's been awhile). He is well hydrated, with good vitals, good urine and bowel output. He has an excellent appetite. We treated and cured his wound. And we saved Medicare a ton of money."

    "Also, I provide 24/7 care, on call at all hours. No pooping his pants waiting for an aide. Oh, and since I am with him 24/7, I noticed when he was severely dehydrated and took him to ER. If he'd been in that facility, we wouldn't be here now, because he wouldn't be here now. By the time one of the staff checked on him, he would have been in a coma, or dead."

    Jim had a jug of water with a straw on his tray in the facility. Like that would keep him hydrated for any length of time. They would have interpreted his babbling as dementia. Would they have taken his temperature to know that it was 103 degrees?

    But, I won't say any of that, of course, because we want Dr. K on our side. And when he sees us, he will know that Jim has been cared for properly.

    I will come prepared with a list of questions. I will ask to see the images of Jim's tumor. Yes, I do want to see it. I want to know what he has inside of him so I can focus healing energy on eliminating it. Of course, I have been doing that all along, but I don't have the image in my mind.

    Of course, we will ask about Jim's WBC and platelets. When should we be concerned? Does Jim need another shot of Neupogen?

    NOT ALONE ANYMORE

    When Jim went through his RA flare and breast cancer scare in 2015, I couldn't go with him for any of his appointments. In 2016, when he saw our PCP and the x ray revealed a mass, I couldn't be with him. I couldn't be with him for his biopsy or appointment with Dr. H, our wonderful now retired pulmonologist. Or when he had his port placed.

    On Jim's birthday in 2017, I did accompany him to his first appointment with Dr. P, while John stayed with Jonathan.

    But that was the last time I was able to be with Jim for his appointments, his tests, his hospitalizations, until April 17, five days after Jonathan passed, when I road in the ambulance with him to ER.

    Jim went through all of that alone. Now, I am able to be with Jim, and he tells me constantly how much that means to him. To have me beside him. To have me to speak for him, to explain things, to sign things.

    Jonathan and Michael adore Jim. They knew that the other person, who was supposed to be their dad, abandoned them. Their hurt was quite apparent to me, as I tried to fill in the gaps he left behind. Then, Jim appeared literally on our doorstep, and we all fell in love. Jonathan and Michael finally had a true DAD in every sense and beyond. Anything they needed, he provided. From changing diapers to changing colostomy bags in the dark with a flashlight. From G tube feeding to deep suctioning. From lifting and carrying them to holding them, comforting them, crying for them, praying for them, and standing watch at night at home or in the hospital.

    Now, they're wonderful Dad is suffering, and they understand his suffering so well. Perhaps, they wanted the care they received for their dad. I was always there for Jonathan and Michael for every test, hospitalization, everything. Now, Dad needs Mom.

    We all need someone, who loves us, in our corner, fighting for us, figuring out what confuses us and what we don't understand. Being our voice, when we can't speak. Being our brain, when we cannot think. Being our advocate, when it's all too much for us.

    When Jim thanks me for taking care of him, I now say, "Well, obviously, this is why God put me here. Caring for our boys and you. We belong together. And that will never change."

    Thank you, Donna, and all of our dear friends here, for your love, prayers and continuing support. We Love You All and pray for you and your loved ones.

    Love & Light,



    Rose
    Hi Rose, about Jim's need for portable oxygen, if I have not mention it before, would this work? https://www.inogen.com I see this portable oxygen machine advertised on TV every 5 moments and always think of Jim. Jim is lucky to have you go with him and yes I'm sure your boys know. Thank you so much for the beautiful note you left me in Jon's thread. You and your family have taught me an incredible amount of things about life and yes indeed, I do hope it makes me a better storyteller and creator. I just wish you and your family did not have to endure such pain in order for me to learn it as I love you all! I do not mean to imply the PTSD would just go away. It never fully does. I always pray for you and I always appreciate your prayers for me.

    Btw completely off topic so I apologize but speaking of prayer, my teacher friend with the stroke has informed me his eyesight may be failing now. His eyes are painful and getting slowly worse. We are hoping he can retain the ability to drive and the pain will stop ASAP. Please pray for him again if you can dear.
    Last edited by funnylegs4; 05-27-2019 at 12:02 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  4. #103
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    houghchrst ~

    Thank you so much for the charitable links. Some of the charities are out of state for me. I'm going to ask Nancy what she can use for her patients. Some supplies I am keeping on hand for Jim, just in case. For example, Jon's wound care supplies were ideal for Jim's little bum wound.

    Because we went through suctioning supplies so fast with Jonathan, our PCP authorized an increase in those supplies. Two orders were delivered within a week of each other, so now we have so many suction canisters etc. that the garage is overflowing with boxes. I should make an inventory list and give it to her, so she can check off what she needs and what she thinks Jim might need eventually.

    I'm not in a hurry to donate all of Jon's wheelchairs. That is a task for later, much later, when I start clearing out the garage. I thought of the after school day center, where Jon and Michael went for many years, while I worked outside our home. It was a private center located in a church. A very large church, with a private school for regular education as well. We donated their chairs, when they got new ones to the center. I don't even know whether the center still exists.

    Someday, also in the future, we will donate our 1998 Dodge Ram van with a raised roof, w/c lift and two tie downs, 4 captain's chairs. It has a little over 28,000 miles on it. We bought and customized it for Jonathan and Michael. In 1999, Michael was in the hospital 3 times in 4 months. Our lives changed drastically then. The last time Michael rode in the van was to the ER in 1999. The last time Jonathan rode in the van was 2008 to the local farm, where we purchased fruit and veggies.

    Jonathan also has a fantastic lift, a Liko, top of the line. I want to donate it to someone, who truly needs it and can't possibly get one like it. We paid for it, because Medi-Cal insisted he could get by with a manual Hoyer lift. Jim and I couldn't do the manual lift as we aged and our RA worsened. Also, Jon's body was changing. He needed more support. We also bought lift sheets to lift Jon in the bed, but they didn't work. His sling is a full sling with artificial sheep wool to protect his bum. It has adapter lift arms. It's really a great lift, and it just sits unused in his room, when someone out there is needing it.

    Right now, I don't actually have the time or energy to focus on all of this, except that I always think ahead and try to plan and be organized.

    The other day, as I was gathering supplies to make our favorite Simple Mills cookies, I decided to remove Jon's seizure meds from the kitchen cabinet. I thought I would try to find the time to gather dirt in bags to pour them into, zip up and throw out. I just didn't have the time, and I didn't want to make the time. It's just too painful right now.

    Today, I finally removed the basket of laundry from Jonathan's room, which has been undisturbed since April 12. In the garage, I carefully and slowly picked up each article, thinking about the last time I bathed him with the washcloths, dried him with the towels, placed the sheet over him, when he was too warm for a shirt, changed the pillow cases. I separated everything according to the 3 hanging cloth bins designated for Jon: blankets, towels, sheets/shirts/pillowcases. All of the bins are overflowing. What am I going to do with all Jonathan's laundry, after I wash it?

    It was bathing and shaving day for Jim today, and as I washed Jim's hair and massaged his head, I said, "Jonathan loved having his hair washed. He just closed his eyes and enjoyed the massage and the warm water. He loved his baths from Day One. I miss him so very much."

    Jim comforted me. "I know. I do too."

    I digress, as I am wont to do. Especially these days.

    Thank you for taking time to find this resource for me and for your lasting friendship, love, prayers and support, Chris. You and your loved ones are in our prayers too.

    funnylegs4 ~

    Healing prayers for your teacher are on the way. Does he know what is causing his eye pain? He has been through so much, and I know how important he is to you. Praying for you both.

    I am confident that our life was meant to be a teaching tool, so we are grateful that others are learning from us and our experiences. This is one of the reasons why I "over" share. Someone might find a small or seemingly unimportant thing to resonate in her/his life.

    As an artist and an advocate through your art, when you notice the small or seemingly unimportant thing as meaningful, you are capturing the essence of life. The small and seemingly unimportant moments are the building blocks of everyone's life story.

    Thank you for mentioning that O2 concentrator. We have seen that commercial, and I have looked at that as an option for Jim to be more mobile.

    I know you weren't implying anything about PTSD, funnylegs4. You love us and want us to heal. I was just explaining that my entire life has been one traumatic event after the other. And I do mean my entire life, not just after Jonathan and Michael were born.

    But I'm still here, as Elton would say, "I'm still standing," one of Jon's favorite songs, to which we danced and laughed so many times.

    To all, we thank you so much for your love, prayers, support and walking beside us. We love you and pray for you and your loved ones. I repeat that because it is true.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  6. #104
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    houghchrst ~

    Thank you so much for the charitable links. Some of the charities are out of state for me. I'm going to ask Nancy what she can use for her patients. Some supplies I am keeping on hand for Jim, just in case. For example, Jon's wound care supplies were ideal for Jim's little bum wound.

    Because we went through suctioning supplies so fast with Jonathan, our PCP authorized an increase in those supplies. Two orders were delivered within a week of each other, so now we have so many suction canisters etc. that the garage is overflowing with boxes. I should make an inventory list and give it to her, so she can check off what she needs and what she thinks Jim might need eventually.

    I'm not in a hurry to donate all of Jon's wheelchairs. That is a task for later, much later, when I start clearing out the garage. I thought of the after school day center, where Jon and Michael went for many years, while I worked outside our home. It was a private center located in a church. A very large church, with a private school for regular education as well. We donated their chairs, when they got new ones to the center. I don't even know whether the center still exists.

    Someday, also in the future, we will donate our 1998 Dodge Ram van with a raised roof, w/c lift and two tie downs, 4 captain's chairs. It has a little over 28,000 miles on it. We bought and customized it for Jonathan and Michael. In 1999, Michael was in the hospital 3 times in 4 months. Our lives changed drastically then. The last time Michael rode in the van was to the ER in 1999. The last time Jonathan rode in the van was 2008 to the local farm, where we purchased fruit and veggies.

    Jonathan also has a fantastic lift, a Liko, top of the line. I want to donate it to someone, who truly needs it and can't possibly get one like it. We paid for it, because Medi-Cal insisted he could get by with a manual Hoyer lift. Jim and I couldn't do the manual lift as we aged and our RA worsened. Also, Jon's body was changing. He needed more support. We also bought lift sheets to lift Jon in the bed, but they didn't work. His sling is a full sling with artificial sheep wool to protect his bum. It has adapter lift arms. It's really a great lift, and it just sits unused in his room, when someone out there is needing it.

    Right now, I don't actually have the time or energy to focus on all of this, except that I always think ahead and try to plan and be organized.

    The other day, as I was gathering supplies to make our favorite Simple Mills cookies, I decided to remove Jon's seizure meds from the kitchen cabinet. I thought I would try to find the time to gather dirt in bags to pour them into, zip up and throw out. I just didn't have the time, and I didn't want to make the time. It's just too painful right now.

    Today, I finally removed the basket of laundry from Jonathan's room, which has been undisturbed since April 12. In the garage, I carefully and slowly picked up each article, thinking about the last time I bathed him with the washcloths, dried him with the towels, placed the sheet over him, when he was too warm for a shirt, changed the pillow cases. I separated everything according to the 3 hanging cloth bins designated for Jon: blankets, towels, sheets/shirts/pillowcases. All of the bins are overflowing. What am I going to do with all Jonathan's laundry, after I wash it?

    It was bathing and shaving day for Jim today, and as I washed Jim's hair and massaged his head, I said, "Jonathan loved having his hair washed. He just closed his eyes and enjoyed the massage and the warm water. He loved his baths from Day One. I miss him so very much."

    Jim comforted me. "I know. I do too."

    I digress, as I am wont to do. Especially these days.

    Thank you for taking time to find this resource for me and for your lasting friendship, love, prayers and support, Chris. You and your loved ones are in our prayers too.

    funnylegs4 ~

    Healing prayers for your teacher are on the way. Does he know what is causing his eye pain? He has been through so much, and I know how important he is to you. Praying for you both.

    I am confident that our life was meant to be a teaching tool, so we are grateful that others are learning from us and our experiences. This is one of the reasons why I "over" share. Someone might find a small or seemingly unimportant thing to resonate in her/his life.

    As an artist and an advocate through your art, when you notice the small or seemingly unimportant thing as meaningful, you are capturing the essence of life. The small and seemingly unimportant moments are the building blocks of everyone's life story.

    Thank you for mentioning that O2 concentrator. We have seen that commercial, and I have looked at that as an option for Jim to be more mobile.

    I know you weren't implying anything about PTSD, funnylegs4. You love us and want us to heal. I was just explaining that my entire life has been one traumatic event after the other. And I do mean my entire life, not just after Jonathan and Michael were born.

    But I'm still here, as Elton would say, "I'm still standing," one of Jon's favorite songs, to which we danced and laughed so many times.

    To all, we thank you so much for your love, prayers, support and walking beside us. We love you and pray for you and your loved ones. I repeat that because it is true.

    Love & Light,



    Rose
    Hi Rose,

    My teacher has informed me he has been diagnosed with glaucoma and had multiple surgeries to relieve the increased ocular pressures in both his eyes. He rubs his eyes a lot because it hurts him pretty badly which is awful for me to watch. I want him to be pain free! I wish his little body didn’t have to go through another medical crisis, especially since as far as I understand it, it is more risky for him to have surgery. I worry that each time he becomes ill will be the last. Thank goodness his job is able to accommodate visual impairment so he doesn’t have to worry about his financial need. Only the driving. I wish I could help him more! Do you know anything about glaucoma??? I knew he had some eye problems(his eyes would roll and twitch from the brain damage, and he’d rub them) but I had not realized the problem had progressed.

    You’re very welcome! Thank you so much once again for the compliments on my work! I promise to keep sharing my story too. Yes it seems the small moments have the biggest impacts. I’m sure wherever Jon’s supplies are donated will make a similar impact. You are doing extremely well.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  8. #105
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Standing At the Crossroad

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

    Prepare. This is lengthy.

    We managed to be ready by 11:30 this morning, with our assortment of bring-along-just-in-case items stuffed in the pockets of Jim’s jacket, which he never wore, and we never used any of those items.

    John was late, so I texted him at 11:40. He’d forgotten our appointment. He and his wife arrived to trade cars, because his backseat is filled with work stuff.

    Jim walked out to the car, while John pushed the O2 cart, and after Jim climbed in the backseat, he rolled down the window. “I feel like I’m suffocating,” he gasped.

    “Ok, let’s take a few minutes here for you to rest after that walk. Let’s take a couple of good, deep breaths.” I said from the front seat. The tank was on 3 liters to accommodate for the exertion. I was ready to turn it up to 4 liters, when Jim relaxed and said that he was fine.

    The weather is stunning, and it was so good for Jim to be out of the house for the first time in 42 days. It’s the first time he’s seen our red Europena roses in the front patio, and they are gorgeous.

    When we arrived at the medical offices, the valet brought a makeshift wheelchair for Jim. A scrawny thing, almost looks like a grocery cart with a seat. No holder on the back for the O2 tank. Those chairs are on the other side of the building, naturally. It’s a good thing I didn’t take Jim’s suggestion to leave the tank cart at home!

    John went in with us, pushing the wheelchair, while I tried to guide the O2 tank. It was comical in a way. Jim was fine, even going over bumps and rough spots on that dinky chair.

    I’d only been there one time, on January 24, 2017, when Jim received his official diagnosis. I’d forgotten how far we had to walk after we exited the elevator. It’s ridiculous to make cancer patients walk that far.

    Then I recalled that with the exception of this time, Jim walked this lengthy, winding path dozens of times in the last 2 1/2 years. John transported Jim to the majority of those appointments, until last year, when Jim started Opdivo again. Jim was able to drive for awhile. When he was having infusions, he also walked on the bridge across the main thoroughfare to the hospital and then to the infusion center. Then, he walked back to the medical building to get the van.

    Now, Jim is frail, and so brave to endeavor to make it through all of this.

    DR. K’S EVALUATION

    Jim, in the wheelchair with his back to the exam room door, me across from him in a guest chair. Dr. K entered the room, looked at Jim with such kindness, smiled, and placed his hand on Jim’s shoulder, “I’m glad you were able to make it on your own today. How are you feeling, Jim?”

    “I’m all right. Better than I was the last time you saw me. Slowly improving.” Jim replied.

    Dr. K turned to me, his hand extended, “Rose, it’s so nice to put your face to your voice. I’m happy to meet you.”

    He sat down in the chair next to Jim and asked for an update. I filled in the blanks: walking to/from bathroom instead of using his briefs or a condom cath/exercise w/out O2; eating voraciously ~ I spend a lot of time in the kitchen; color has improved greatly; urine and bowel output excellent; vitals, excellent; weaned down to 2 liters of O2, SATS, excellent.

    BLOOD WORK RESULTS

    Dr. K said that overall, Jim’s blood work looks pretty good, stable in some cases. WBC is 1.9 (down from 2), platelets are 22, about the same, but the good news is that Jim’s absolute neutrophils are 1200, which Dr. K said is “excellent.”

    Liver function results are high, and Dr. K expressed concern about this result. “It could be a reaction to Opdivo, as many of your symptoms could be, or the steroids, or, it could be cancer. But this is something that we might want to look into.”

    "Your bone marrow is damaged, and that could be from previous chemo infusions, or Opdivo, or steroids, or cancer.”

    Dr. K was perched on the exam table now, showing us results on the computer. He glanced back and forth between Jim and me to make sure we were getting the gist of what he was telling us.

    WHAT NEXT THEN?

    “I’d like you to have a PET scan and a brain MRI, when you’re up to it, so we can determine whether your cancer has spread, and what the condition of the tumor is now. There’s no point in scheduling radiation on the tumor, until we know what else might be going on inside of you.

    “If the cancer has spread, then there’s no point in radiating the tumor, because you are not a candidate for further chemo or immunotherapy now. Your system won’t be able to tolerate it. Radiation might reduce pain, and hopefully the tumor, but it can also damage surrounding tissue, and that’s a risk for you, since your lungs are not in good shape anyway." (emphysema, COPD)

    THE TALK

    Dr. K worked up to this carefully, laying all of the ground work.

    Looking at Jim, he said, “It’s time for us to have this conversation about how far you want to go. Do you want intubation, a feeding tube, CPR, dialysis … ? These are decisions you and your wife need to make. And your wife needs to know your desires, because she might have to make the decision for you.”

    I could see the sadness in his eyes, and I felt his compassion for us. After all, the day Jonathan passed, he called to check on Jim, and I answered and told him that Jon had passed, and he was startled/shocked.

    Jim responded, “Rose and I have discussed this many times. She will make the right decision, if I can’t. And, she’s the only reason why I’m still here, Doc. Why I’m here in the office today too. I don’t want to leave her, but I don’t want her to suffer taking care of me either.”

    Dr. K looked at me. “I will do whatever Jim wants, and I will take care of him through it all.”

    “You have taken extraordinary care of Jim.” Dr. K smiled knowingly. I appreciated this comment so much, because he acknowledged me as a good caregiver, when I have been struggling with doubts in that regard, since Jonathan’s passing.

    Dr. K then said, “So, shall I list you as DNR now?”

    I felt a sharp pain, like an arrow through my heart. It subsided. Jim and I looked at each other, both of us sad, but trying to be strong for each other. “Yes,” Jim answered. “Yes,” I answered.

    HOSPICE

    Dr. K then suggested hospice, but Jim and I balked. This is primarily because Jim has been improving so much over the last week or so, that we’re not there yet.

    Dr, K was fine with our hesitation. He said to me, “Hospice might be able to help you with taking care of Jim.”

    “Yes, when that time arrives, but now isn’t that time.”

    He mentioned a hospice service, which his patients seemed to like. I reminded him that we are associated with a home health agency, which also provides hospice. And that Jon’s nurse is now Jim’s nurse, and a family member, who we adore, and she will guide us on this journey.

    NEXT APPOINTMENT

    Dr. K said he’d like to see Jim in 2 months, and that he hopes that Jim is strong enough to have the PET scan and MRI before then. Blood draws will be twice a month by Nancy. On her next visit, he will order a UA to make sure that Jim doesn’t have a UTI. Steroids can hide the symptoms. Since I mentioned that Jim had blood in his urine twice over a period of 10 days, he ordered a UA. Very simple/easy.

    LEAVING THE APPOINTMENT

    When we exited the exam area to the outer lobby, there was John, waiting for us. We were going to call him, when we were done, but he saw how much effort it was to get Jim to the appointment, and he wanted to be there for us to take us out.

    I just don’t know what we would have done through all of this without John. He is an angel in every way.

    When we were outside waiting for John to bring his car out of the garage, a valet came up to Jim, tapped him on the shoulder, and she greeted him smiling, “HI JIM! Haven’t seen you in a long time! How are you? You’re looking good. What can I do to help you? Do you want me to go get your friend out of the garage? He might not be able to make a right turn.”

    Just then, we saw John making a right turn.

    She helped Jim stand and get into the car, while John loaded in the O2 tank. The window was rolled down for Jim (John again thinking of everything). I turned to the valet and thanked her for her help and for being so good to my husband. She smiled, “Oh we love him! He’s our favorite!”

    “I hope we see you again!” I said as I was climbing into the front seat.

    “I hope so too!” And I could tell that she truly meant it.

    AT HOME

    It was all about undressing, getting into bed, set up with O2, breathing treatment, lunch, meds, hydration. Then, Jim fell asleep and is still napping. He is exhausted.

    We haven’t had a chance to debrief. But we will, when we are both more rested and have digested this news.

    Dr. K said to me, “Just keep doing what you’re doing.”

    I mentioned that Jim was still taking CBD. Dr. K responded, “Good.”

    Placating me? Or truly believing that CBD works? I don’t know. But after all of this time, and at this point, it doesn’t really matter.

    So, yeah. It’s a lot to take in and process. Essentially, Dr. K was telling us that Jim is beyond fixing or repairing and that the options have been reduced to nearly zero.

    We didn’t ask, and he didn’t offer a timeline, as in X months for survival. Well, 2 years ago around this time, Dr. P gave him 3-6 months. So, we don’t need or want predictions.

    We do need to know what to expect, what signs indicate that he needs hospice, etc.

    Right now, what I know is that Jim ate half of a goat cheese and tomato pizza for lunch, and for dinner he wants a Beyond Burger in a bun, with lettuce, cheese, and avocado, and fresh hash browns. Maybe some veggie baked beans too. Probably some cashew ice cream and a cuppa after dinner.

    We may not have long together, but while we are together, we’re going to live it our way. Jim is not ready for hospice right now. We’ll know when that time arrives. We’ll know.

    Thank you all so much for your love, prayers, constant support, understanding, compassion, friendship, and just being wonderful you. We feel you around us, enveloping us with a cloak of LOVE, and we love you.

    We pray for you and your loved ones and are sending you all healing, positive energy. Stay the course. Fight the good fight. We all have each other, so we are never alone.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  10. #106
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Prepare. This is lengthy.

    We managed to be ready by 11:30 this morning, with our assortment of bring-along-just-in-case items stuffed in the pockets of Jim’s jacket, which he never wore, and we never used any of those items.

    John was late, so I texted him at 11:40. He’d forgotten our appointment. He and his wife arrived to trade cars, because his backseat is filled with work stuff.

    Jim walked out to the car, while John pushed the O2 cart, and after Jim climbed in the backseat, he rolled down the window. “I feel like I’m suffocating,” he gasped.

    “Ok, let’s take a few minutes here for you to rest after that walk. Let’s take a couple of good, deep breaths.” I said from the front seat. The tank was on 3 liters to accommodate for the exertion. I was ready to turn it up to 4 liters, when Jim relaxed and said that he was fine.

    The weather is stunning, and it was so good for Jim to be out of the house for the first time in 42 days. It’s the first time he’s seen our red Europena roses in the front patio, and they are gorgeous.

    When we arrived at the medical offices, the valet brought a makeshift wheelchair for Jim. A scrawny thing, almost looks like a grocery cart with a seat. No holder on the back for the O2 tank. Those chairs are on the other side of the building, naturally. It’s a good thing I didn’t take Jim’s suggestion to leave the tank cart at home!

    John went in with us, pushing the wheelchair, while I tried to guide the O2 tank. It was comical in a way. Jim was fine, even going over bumps and rough spots on that dinky chair.

    I’d only been there one time, on January 24, 2017, when Jim received his official diagnosis. I’d forgotten how far we had to walk after we exited the elevator. It’s ridiculous to make cancer patients walk that far.

    Then I recalled that with the exception of this time, Jim walked this lengthy, winding path dozens of times in the last 2 1/2 years. John transported Jim to the majority of those appointments, until last year, when Jim started Opdivo again. Jim was able to drive for awhile. When he was having infusions, he also walked on the bridge across the main thoroughfare to the hospital and then to the infusion center. Then, he walked back to the medical building to get the van.

    Now, Jim is frail, and so brave to endeavor to make it through all of this.

    DR. K’S EVALUATION

    Jim, in the wheelchair with his back to the exam room door, me across from him in a guest chair. Dr. K entered the room, looked at Jim with such kindness, smiled, and placed his hand on Jim’s shoulder, “I’m glad you were able to make it on your own today. How are you feeling, Jim?”

    “I’m all right. Better than I was the last time you saw me. Slowly improving.” Jim replied.

    Dr. K turned to me, his hand extended, “Rose, it’s so nice to put your face to your voice. I’m happy to meet you.”

    He sat down in the chair next to Jim and asked for an update. I filled in the blanks: walking to/from bathroom instead of using his briefs or a condom cath/exercise w/out O2; eating voraciously ~ I spend a lot of time in the kitchen; color has improved greatly; urine and bowel output excellent; vitals, excellent; weaned down to 2 liters of O2, SATS, excellent.

    BLOOD WORK RESULTS

    Dr. K said that overall, Jim’s blood work looks pretty good, stable in some cases. WBC is 1.9 (down from 2), platelets are 22, about the same, but the good news is that Jim’s absolute neutrophils are 1200, which Dr. K said is “excellent.”

    Liver function results are high, and Dr. K expressed concern about this result. “It could be a reaction to Opdivo, as many of your symptoms could be, or the steroids, or, it could be cancer. But this is something that we might want to look into.”

    "Your bone marrow is damaged, and that could be from previous chemo infusions, or Opdivo, or steroids, or cancer.”

    Dr. K was perched on the exam table now, showing us results on the computer. He glanced back and forth between Jim and me to make sure we were getting the gist of what he was telling us.

    WHAT NEXT THEN?

    “I’d like you to have a PET scan and a brain MRI, when you’re up to it, so we can determine whether your cancer has spread, and what the condition of the tumor is now. There’s no point in scheduling radiation on the tumor, until we know what else might be going on inside of you.

    “If the cancer has spread, then there’s no point in radiating the tumor, because you are not a candidate for further chemo or immunotherapy now. Your system won’t be able to tolerate it. Radiation might reduce pain, and hopefully the tumor, but it can also damage surrounding tissue, and that’s a risk for you, since your lungs are not in good shape anyway." (emphysema, COPD)

    THE TALK

    Dr. K worked up to this carefully, laying all of the ground work.

    Looking at Jim, he said, “It’s time for us to have this conversation about how far you want to go. Do you want intubation, a feeding tube, CPR, dialysis … ? These are decisions you and your wife need to make. And your wife needs to know your desires, because she might have to make the decision for you.”

    I could see the sadness in his eyes, and I felt his compassion for us. After all, the day Jonathan passed, he called to check on Jim, and I answered and told him that Jon had passed, and he was startled/shocked.

    Jim responded, “Rose and I have discussed this many times. She will make the right decision, if I can’t. And, she’s the only reason why I’m still here, Doc. Why I’m here in the office today too. I don’t want to leave her, but I don’t want her to suffer taking care of me either.”

    Dr. K looked at me. “I will do whatever Jim wants, and I will take care of him through it all.”

    “You have taken extraordinary care of Jim.” Dr. K smiled knowingly. I appreciated this comment so much, because he acknowledged me as a good caregiver, when I have been struggling with doubts in that regard, since Jonathan’s passing.

    Dr. K then said, “So, shall I list you as DNR now?”

    I felt a sharp pain, like an arrow through my heart. It subsided. Jim and I looked at each other, both of us sad, but trying to be strong for each other. “Yes,” Jim answered. “Yes,” I answered.

    HOSPICE

    Dr. K then suggested hospice, but Jim and I balked. This is primarily because Jim has been improving so much over the last week or so, that we’re not there yet.

    Dr, K was fine with our hesitation. He said to me, “Hospice might be able to help you with taking care of Jim.”

    “Yes, when that time arrives, but now isn’t that time.”

    He mentioned a hospice service, which his patients seemed to like. I reminded him that we are associated with a home health agency, which also provides hospice. And that Jon’s nurse is now Jim’s nurse, and a family member, who we adore, and she will guide us on this journey.

    NEXT APPOINTMENT

    Dr. K said he’d like to see Jim in 2 months, and that he hopes that Jim is strong enough to have the PET scan and MRI before then. Blood draws will be twice a month by Nancy. On her next visit, he will order a UA to make sure that Jim doesn’t have a UTI. Steroids can hide the symptoms. Since I mentioned that Jim had blood in his urine twice over a period of 10 days, he ordered a UA. Very simple/easy.

    LEAVING THE APPOINTMENT

    When we exited the exam area to the outer lobby, there was John, waiting for us. We were going to call him, when we were done, but he saw how much effort it was to get Jim to the appointment, and he wanted to be there for us to take us out.

    I just don’t know what we would have done through all of this without John. He is an angel in every way.

    When we were outside waiting for John to bring his car out of the garage, a valet came up to Jim, tapped him on the shoulder, and she greeted him smiling, “HI JIM! Haven’t seen you in a long time! How are you? You’re looking good. What can I do to help you? Do you want me to go get your friend out of the garage? He might not be able to make a right turn.”

    Just then, we saw John making a right turn.

    She helped Jim stand and get into the car, while John loaded in the O2 tank. The window was rolled down for Jim (John again thinking of everything). I turned to the valet and thanked her for her help and for being so good to my husband. She smiled, “Oh we love him! He’s our favorite!”

    “I hope we see you again!” I said as I was climbing into the front seat.

    “I hope so too!” And I could tell that she truly meant it.

    AT HOME

    It was all about undressing, getting into bed, set up with O2, breathing treatment, lunch, meds, hydration. Then, Jim fell asleep and is still napping. He is exhausted.

    We haven’t had a chance to debrief. But we will, when we are both more rested and have digested this news.

    Dr. K said to me, “Just keep doing what you’re doing.”

    I mentioned that Jim was still taking CBD. Dr. K responded, “Good.”

    Placating me? Or truly believing that CBD works? I don’t know. But after all of this time, and at this point, it doesn’t really matter.

    So, yeah. It’s a lot to take in and process. Essentially, Dr. K was telling us that Jim is beyond fixing or repairing and that the options have been reduced to nearly zero.

    We didn’t ask, and he didn’t offer a timeline, as in X months for survival. Well, 2 years ago around this time, Dr. P gave him 3-6 months. So, we don’t need or want predictions.

    We do need to know what to expect, what signs indicate that he needs hospice, etc.

    Right now, what I know is that Jim ate half of a goat cheese and tomato pizza for lunch, and for dinner he wants a Beyond Burger in a bun, with lettuce, cheese, and avocado, and fresh hash browns. Maybe some veggie baked beans too. Probably some cashew ice cream and a cuppa after dinner.

    We may not have long together, but while we are together, we’re going to live it our way. Jim is not ready for hospice right now. We’ll know when that time arrives. We’ll know.

    Thank you all so much for your love, prayers, constant support, understanding, compassion, friendship, and just being wonderful you. We feel you around us, enveloping us with a cloak of LOVE, and we love you.

    We pray for you and your loved ones and are sending you all healing, positive energy. Stay the course. Fight the good fight. We all have each other, so we are never alone.

    Love & Light,



    Rose
    The part about DNR felt like it stabbed me in the heart too. I had one relative on DNR. I'm glad you had the hard discussions and I'm glad that Dr K was a good enough medical professional NOT to predict life expectancy because life expectancy is seemingly always wrongly guessed at. I completely agree it is not time for Hospice. All my prayers to you on this sad journey.

    btw the prayers seem to already be helping my teacher friend. He's in less pain.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
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  12. #107
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    Rose, Jim seems to be doing overall very well. I think his appetite and eating good foods and his supplements that he takes and the care that you have given him has brought him this far already. It sounds to me that Dr. K really didn't know a lot more because the scans have not been done for him to look at and see what the tumor is doing. I know the questions he asked, especially about the DNR, were shocking and really took you down. But remember the other Doctor thought he would be gone long before now. As good as Dr. K is he doesn't really know and a lot of the part about hospice would be to take some stress off you. He realizes you have been through a lot. You definitely gave the right answers. You will know when and IF it is time.

    God Bless John.
    Virginia

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  14. #108
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    I'm sure it was a difficult appointment, Rose. I'm glad everything worked well to get Jim there. Dr. K sounds like a kind, sensitive doctor.

    I agree with Virginia, Rose. I don't think he'd be ordering an MRI or PET scan if hospice was a foregone conclusion. I think he was just bringing up everything you might need to turn your mind to and was preparing you for whatever the future might hold.

    It actually doesn't sound like a lot of bad news, outside of the liver panel, but I'm not sure how concerning it was. A lot of positives, and some big unknowns - is it the cancer creating some of his issues, or complications from treatment?

    More importantly, functionally, he's been doing well, and his appetite is hearty, which is a great sign.

    Big hugs, Rose. Very glad John was so helpful, and the valet was so sweet. I don't know if people appreciate how impactful those small gestures can be.
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    Rose, What a day! So much for your minds and your bodies all in one day! So many positive things you've done such an amazing job! I'm so thankful that both of you were able to be at the appointment. I hope Jim can get the tests done promptly and you can move forward with more good news. Any positive news can be uplifting I'm sure. Always sending strong prayers your way. Thank you for taking the time to always keep us updated. I think about you and Jim so often.
    Mary Grace

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  18. #110
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    Default Another Long Reply

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

    Caution: This is lengthy. I’ve been composing it on and off for the past couple of days. I’m just trying to process everything. And take extra good care of Jim. Thank you for reading. Bless You!

    funnylegs4 ~

    Excellent news that your teacher friend is in less pain. I will continue to send healing prayers for him. You are a good friend, and he is blessed to have you in his life and on his side.

    It isn’t time for hospice, as Jim has been functioning fairly well. But the Dr. K visit took the wind out of his sails, and he had a restless night with lots of trips to the bathroom. I heard him groaning at 3:30 Saturday morning and went down to check on him. He was wiped out. I gave him a breathing treatment. And another at 7 a.m.

    He improved all day Saturday and yesterday. He’s holding very good SATS on 3 liters now.

    Jim produced some brown urine a few times over the weekend. With his liver panel being less than stellar, I am concerned that this is the source of the brown urine. Jim said that he’d been drinking plenty, but I could tell by the amount of water still in his water bottle that he hadn’t. I persuaded him to increase his intake, and now his urine is clean.

    Dr. K mentioned hepatitis yesterday, not the infectious kind, but the kind, which develops from medications. Given the amount of drugs Jim has taken, including dye for tests, it’s no wonder that his liver is impacted.

    Life expectancy predictions can be accurate sometimes. My aunt was diagnosed with lung and liver cancer last year. Her oncologist gave her a 4 month timeline, and in 4 months, she passed. She lived in a more rural area in a small State, and she didn’t have access to the quality of care available to Jim.

    Thank you so much for your continuing prayers, dear friend.


    Virginia ~

    I do feel that Dr. K was taking the opportunity of having us both together for the first time to address the future with us. Jim has to make decisions, and I need to know what they are (already do, of course). But Dr. K was facilitating that discussion with us. He meticulously built up to asking the hard questions.

    First the background, the good and the not so good, then, the lack of remaining treatment options, and his suggestion for a PET scan and brain MRI to rule in/out cancer.

    Confronting reality is harsh in a multitude of ways. Things have been improving with Jim, so we didn’t want to have our positivity stomped on with “well, there’s this …” and DNR and hospice. But we have to face facts, and we must prepare.

    Dr. K has probably counseled many cancer patients and their loved ones about the end stage. He couldn’t have been gentler, kinder, or more compassionate. I was truly impressed, and that’s saying A LOT, considering the many doctors I’ve met in my life.

    I’m sure that Dr. K’s suggestion of hospice was for me, as well as for Jim. He probably has children and can’t imagine the pain of losing them. Especially given our circumstances of caring for Jon for 49 years.

    Most people can’t even fathom parents providing care for that length of time. We were told this many times in ICU with our boys that most older patients with developmental disabilities come from out of home residential or acute care facilities, because their parents aged out, were unable to care for them, or died, before their children.

    Thank you for your blessing for John. He’s just incredibly wonderful to us. I truly don’t know how we could have managed through Jim’s cancer, Jon’s needs, Jon’s passing, and now this phase of Jim’s illness without John. I know he will be beside us all the way, and he and his family will be available to support and help me always. I can’t even begin to describe how grateful we are for John.

    Thank you for your continuing support, encouragement and prayers for us.



    SuzE-Q ~

    Infusion nurses have told Jim and me that he’s their favorite patient. So, it was not a surprise to me that the valet said Jim was their favorite. Jim is very cordial, witty, charming, and kind. He isn’t demanding, and he doesn’t expect people to serve him. He knows exactly how it feels to be treated as “less than,” so he respects everyone for the job they do.

    In so many ways, Jim is doing well, but in other ways, he is fragile and struggling. Lots of breathing issues, particularly with exertion. Things can change on a dime, as we well know, after unexpectedly losing Jonathan.

    I do feel that Dr. K was preparing us for the eventuality of Jim losing his battle with this despicable disease. Dr. K also knows and admits that the chemo and immunotherapy given to treat cancer can cause cancer, as well as other terminal issues with vital organs, such as the liver.

    Dr. K was sorry that Jim couldn’t continue taking Opdivo, because he said, “It was working for you.” But the opposite side is that it caused other problems, which have now caught up with Jim.

    We believe that Opdivo extended Jim’s life, as the only other option was Taxol (chemo), which has a litany of problems too. After his first Opdivo dose in 2017, the tumor shrunk in half. Both drugs were risky, so we went with the one that worked.

    We did take away the positives ~ the excellent absolute neutrophils, the stability of his WBC and platelets, as well as other good results with sodium, potassium, magnesium, glucose, etc.

    Jim’s color is very good, no jaundice. But his enlarged belly is quite concerning. We now realize that this is liver-based, as Nancy had suggested.

    All we can do is what we’re doing.

    And, Jim’s appetite is amazing. Saturday was Taco Night for us, and he scarfed back 3 large tacos with all the good stuffings. Last night, we tried the new Field Roast patties (delicious), with boiled red/buttery yukon potatoes and garlic butter, curried asparagus, and cauliflower risotto. He loved every bite. We’ve been through many rounds of loss of appetite with Jim, but now, he’s always ready to eat all day and night. How can that be anything but a positive sign?

    Thank you for the Big Hugs!


    Mary Grace ~

    Thank you for thinking of us and sending us positive energy, and for taking the time out of your very busy life to support us.

    We cling to the positives, every single one of them. Today, we talked more about the visit, and I emphasized that Jim is doing well. I listed off ofall the ways that he was doing well: urine/bowel output, excellent vitals, incredible appetite, no pain, no headaches, no blurry vision (other than cataract surgery related ~ the implant he paid for to reduce floaties seems to be failing). He doesn’t even complain of RA pain now.

    Just like Jonathan and Michael, it is hard for us to imagine that Jim won’t continue on as he is now for a long time. And, just like Jonathan and Michael, we realize that it’s foolish to believe that we can defy the odds forever.

    Jim is not inclined now to want the PET scan and brain MRI. He declared, “I’m dying regardless of those results, because there aren’t any treatment options left for me, even if/when it spreads.”

    I vividly recall when my uncle was dying of cancer in the late 1970s. He had chemo, and it made him very ill and created new problems. He told my aunt, “If I’d known that I was going to go through all of this and die anyway, I would never have agreed to it.”

    Another aunt, my Godmother, fought cancer for 13 years. She passed just before her 90th birthday. She was offered various treatments after enduring way too many, and she said, “Absolutely not. I’m not going to die on the vine, but I’m not going to put myself through any more of that torture.”

    Just as Jim says he doesn’t want to watch me caring for him and suffering, I don’t want to watch him fighting to the point of exhaustion and suffering.

    One night last year, for whatever reason, I was feeling afraid about Jim dying. I caught him in the hallway, and I grabbed him and cried, “Hold me close.” At some point I sputtered, “Please don’t leave me.”

    He said, “I’m not planning on doing that any time soon. I’ll stay as long as I can. But I don’t want to create any more hardship for you.”

    Now that Jonathan has passed, things have changed. On the one hand, Jim knows I am bereft and need him with me as I grieve. On the other hand, Jim is probably relieved, because now, he won’t leave me behind with Jonathan to care for on my own. He worried about that constantly.

    All that we can do is just take each day as it comes, as we have always done, and keep moving forward as best as we can.

    Our Precious Angels are watching over us and will guide us through this path in our journey. Someday, some glorious day, we will all be reunited in Bliss.

    Thank you all so much for your love, prayers, and continuing support. You and your loved ones are always in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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