Page 16 of 23 FirstFirst ... 61112131415161718192021 ... LastLast
Results 151 to 160 of 223

Thread: Jim's Journey

  1. #151
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,164
    Blog Entries
    9

    Default

    My dear Rose,
    I hope you find just the right car - that would be a blessing, not to have to climb up inside the van. That is just too hard for you both. We have a Subaru which is a great car for Canada because it's compact, has a hatchback for Daisy and has four wheel drive (essential for ice and snow in the winter). Hondas are good cars too.

    How is Jim feeling today? Is he feeling more comfortable in lying without the mattress cover? If Jim's pain increases, are you able to access community pain services (usually on the palliative team, but we use these services even though Nick is no longer palliative)? The community pain team if you can access it is fantastic in every way - they advise on pain meds of course but also make referrals to specialist OTs who know all about just the right pillows, etc. I hope you will both find comfort with Jon's strong presence (Michael's too!) wherever Jim settles in the house. I know you will know best how and where he will be cosy and I know that love will be all around.
    Sending much 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


  2. The following 5 users say "thanks"


  3. #152
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,401
    Blog Entries
    1

    Default

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

    tic chick ~

    Thank you. That was lovely.

    Jim and I both strongly feel that Jonathan knew how ill Jim is and that he would need intense care from me. Within 14 months of Michaelís passing, Jonathan was near death with a gangrenous twisted sigmoid colon. As the years went by, and Jonathanís health declined, Jim and I wondered if Michael had timed his departure to make room for Jonathanís care. Similarly, we wonder if Jonathan and Michael agreed that it was time for Jonathan to make room for Jimís care.

    This may sound odd to some, but to us, it makes sense, because we are so connected to our boys, and they are powerful spirits. One friend once said to us, ďThey have a foot on both sides.Ē Meaning: Part of them is here on Earth; the other part of them is in the Spiritual Realm.

    Iím so sorry that you lost your mother. I am grateful for you and for her that you were able to be with her, when she passed.

    Thank you for wishing us more love and peace. We wish the same for you.

    Donna ~

    Weíve settled on a Toyota RAV4, as that is the kind of car Johnís wife drives, and John has used her car a few times. Jim can easily access and egress from it. Johnís car is a Honda, and itís more compact and lower to the ground. Easier to access than our van, but then, at this point anything would be, but not as easy as the RAV4.

    John has a friend in the automotive business, who ranks Toyota as the top car for reliability and longevity. He also said that his wifeís car has had no problems at all, and she drives long distances. We just drive around town. Our 1998 van has 23,000 miles on it.

    The RAV4 is pricier than what we were hoping to spend, but I said to Jim, ďThis is the last car we will ever buy.Ē

    He laughed.

    We will hold onto the van in case we need to transport Jim in a wheelchair, which would mean Iíd need Johnís help. Also, our recently diagnosed dear friend may need a wheelchair van in the future. So, it has a destination, when that time arrives.

    I checked another Toyota dealer on line today, and it had no indication of whether it does Express Service. So again, I did the on line chat, and again, I was asked for my name, email, address. This one said, ďIíll have to ask our eCommerce dept. to contact you.Ē

    I responded,"You just lost my business,Ē and logged out.

    Jim felt much better today. Much less pain. I will write a separate post about our visit with the radiation oncologist, or this one will go on for days.

    I have never heard of community pain services. I suspect that we have a pain management department at our hospital.

    Nancy and I had a brief chat today and discussed pain med. She mentioned morphine drops. She also likes the Fentanyl patch (Lots of Fentanyl patch fans here! ). She agreed that we should titrate up, but she is open to the patch to start, if Jim and I are okay with it.

    She will visit Friday, because Jim has to have a ďre-certĒ to continue services. She will probably draw blood. Sheís going to call Dr. K tomorrow for an order and to discuss pain management.

    She also said that she doesnít have to draw too much blood to get the needed amount. I guess there are ways around these blood tests that she and the lab know. She has a good relationship with all of the labs in the area.

    For now, Iím letting Jim tell me where he wants to be. It may be that he needs to be in Jonís bed at some point. Itís there, waiting for him. I canít even begin to describe how hard that will be for both of us emotionally.

    My dad always told me, ďYou have to play the hand thatís dealt to you.Ē And, so with every new hand dealt to me, I play it to the best of my ability. If winning is still being here, then, I am winning.

    Thank you for your love and prayers, and we send our love and prayers to you, Jim, Nick, Natalie, Daisy, and your family.

    Love, hugs, prayers, and gratitude to all ~

    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.

  4. The following user says "thanks"


  5. #153
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    154

    Default

    A RAV4? Fentanyl patches? Wow! What a difference a few days makes.

    I’m on my second RAV4. I forgot about “Pearl” that I drove from 2002-2013. It was so great that’s why I got another and I only traded that one in because my daughter couldn’t get the hang of the 5 speed.

    Good luck with the pain management. I think community pain services must be a Canadian thing. We aren’t that civilized in the US.

    C

  6. The following 3 users say "thanks"


  7. #154
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,401
    Blog Entries
    1

    Default Radiation Oncologist Consult Results

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

    Thankfully, Jim felt much less pain today, after taking a Tylenol with Codeine at midnight. He took another one at 1:00 p.m. prior to the appointment to keep the pain at bay, which it did and continues to do into this evening.

    Jim showered on his own, then I helped dry him. He shaved. I helped him to dress. Socks, shoes, bending things, are difficult for him. He’s a tad constipated, which I suspect could be from the iron infusions catching up to him or from the Nexium. So he ate a smaller breakfast, and we skipped the banana.

    He loves the new sweatpants I ordered from Costco a few days ago. He even looked at me across the exam room today and mouthed, “I love these pants” as he tugged on them.

    He’s going to have 3 weeks of treatment, which equals 15 days. So, I’m going to order a case of these sweatpants.

    John arrived early with a gift for Jim ~ wireless earbuds, which he hooked up to the iPad bluetooth. So, Jim can watch anything on the iPad and use the earbuds without being hooked up to the iPad. He showed us how to use them, and they are simple. But, he also told me, “Call me if you forget or need help with the iPad or earbuds,” when he brought us home from the appointment.

    Jim was able to walk to the Radiation offices without a wheelchair, and back out afterwards, without any problems. No pain. So whatever the Tylenol/Codeine is doing, it’s working.

    DR. S, THE RADIATION ONCOLOGIST

    Anxiously awaiting his arrival, Jim and I wondered how he would respond to us. In walks this very tall, lanky, slender, YOUNG man. Big smile on his face, hand extended to Jim, announcing, “Hi, I’m First Name/Last Name.” Not, “I’m Dr. Last Name.” Turned to me, hand extended, “And you are Jim’s wife?”

    Oh, I had some lines going through my head, but I resisted. “Yes, I’m his wife, Rose.”

    When we got home, I Googled him. He got his MD in 2014. Started radiation oncology in June this year.

    It’s like we got the Mayor Pete Buttigieg of radiation oncologists.

    He was thorough, concise, honest, compassionate, friendly, enthusiastic, and has a sense of humor. We both like him.

    As I said to John on the drive home, “When I first became a teacher, I was gung ho, full of great ideas, and I was going to be the best teacher and change the world!” Like teachers, doctors get burned out. It’s nice to have a young person, who really wants to do his best to help us.

    THE PLAN

    Less aggressive than the plan earlier this year and with a lower dose of radiation. Five days a week for 3 weeks.

    Staging and simulation is still needed, so on Monday at 2 p.m., John will transport us back to the radiation oncology office, and Jim will go through 2 hours of staging. Not all of that will be on the hard surface of the scanner. Jim will have to have his arms raised, and it will be painful.

    Adverse effects:

    Increased pain
    Lung inflammation
    Increased fatigue
    Decrease in WBC and RBC

    Apparently, there is a lymph node in question from the PET scan to the right of the tumor, which may be able to be radiated. The rib bone will likely be affected. That could be good or not so good.

    OUTCOME

    The objective is to reduce the size of the tumor to reduce Jim’s pain, and the tumor’s encroachment on the rib(s).

    Dr. S repeatedly said, “This is not a cure. This is just to relieve your pain, and to get some control over the tumor, since you are not a candidate for further chemo or Opdivo.” (I went over the reasons for that in the beginning of our meeting.)

    So, we are buying time.

    I told Jim this afternoon, “If at any point, you decide you cannot go through with this treatment, or the side effects are too much for you, we will stop.” Jim agreed.

    I know that Jim is doing this for me. He does everything for me. But, I cannot bear to watch him suffer with excruciating pain. And I will not allow it.

    We have much to discuss and explore in the next few days. Much to process and sort out logically and prayerfully.

    Thank you all so much for your prayers, love, support, understanding, compassion, and being here for us. We love you and pray for you and your loved ones every day.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 10-02-2019 at 06:31 PM.
    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.

  8. The following 6 users say "thanks"


  9. #155
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    154

    Default

    You’re on your way. Stock up on super moisturizer like Aquafor, look into some aloe Vera leaves to apply to the skin afterward (groceries sell them), and remember to hydrate. You may want to reconsider that “poo paste” recipe as constipation will likely be a companion from here on since pain meds are on board. My neighbor is still bragging about her poos since starting the paste! Ha!

  10. The following 5 users say "thanks"


  11. #156
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,744
    Blog Entries
    30

    Default

    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Thankfully, Jim felt much less pain today, after taking a Tylenol with Codeine at midnight. He took another one at 1:00 p.m. prior to the appointment to keep the pain at bay, which it did and continues to do into this evening.

    Jim showered on his own, then I helped dry him. He shaved. I helped him to dress. Socks, shoes, bending things, are difficult for him. He’s a tad constipated, which I suspect could be from the iron infusions catching up to him or from the Nexium. So he ate a smaller breakfast, and we skipped the banana.

    He loves the new sweatpants I ordered from Costco a few days ago. He even looked at me across the exam room today and mouthed, “I love these pants” as he tugged on them.

    He’s going to have 3 weeks of treatment, which equals 15 days. So, I’m going to order a case of these sweatpants.

    John arrived early with a gift for Jim ~ wireless earbuds, which he hooked up to the iPad bluetooth. So, Jim can watch anything on the iPad and use the earbuds without being hooked up to the iPad. He showed us how to use them, and they are simple. But, he also told me, “Call me if you forget or need help with the iPad or earbuds,” when he brought us home from the appointment.

    Jim was able to walk to the Radiation offices without a wheelchair, and back out afterwards, without any problems. No pain. So whatever the Tylenol/Codeine is doing, it’s working.

    DR. S, THE RADIATION ONCOLOGIST

    Anxiously awaiting his arrival, Jim and I wondered how he would respond to us. In walks this very tall, lanky, slender, YOUNG man. Big smile on his face, hand extended to Jim, announcing, “Hi, I’m First Name/Last Name.” Not, “I’m Dr. Last Name.” Turned to me, hand extended, “And you are Jim’s wife?”

    Oh, I had some lines going through my head, but I resisted. “Yes, I’m his wife, Rose.”

    When we got home, I Googled him. He got his MD in 2014. Started radiation oncology in June this year.

    It’s like we got the Mayor Pete Buttigieg of radiation oncologists.

    He was thorough, concise, honest, compassionate, friendly, enthusiastic, and has a sense of humor. We both like him.

    As I said to John on the drive home, “When I first became a teacher, I was gung ho, full of great ideas, and I was going to be the best teacher and change the world!” Like teachers, doctors get burned out. It’s nice to have a young person, who really wants to do his best to help us.

    THE PLAN

    Less aggressive than the plan earlier this year and with a lower dose of radiation. Five days a week for 3 weeks.

    Staging and simulation is still needed, so on Monday at 2 p.m., John will transport us back to the radiation oncology office, and Jim will go through 2 hours of staging. Not all of that will be on the hard surface of the scanner. Jim will have to have his arms raised, and it will be painful.

    Adverse effects:

    Increased pain
    Lung inflammation
    Increased fatigue
    Decrease in WBC and RBC

    Apparently, there is a lymph node in question from the PET scan to the right of the tumor, which may be able to be radiated. The rib bone will likely be affected. That could be good or not so good.

    OUTCOME

    The objective is to reduce the size of the tumor to reduce Jim’s pain, and the tumor’s encroachment on the rib(s).

    Dr. S repeatedly said, “This is not a cure. This is just to relieve your pain, and to get some control over the tumor, since you are not a candidate for further chemo or Opdivo.” (I went over the reasons for that in the beginning of our meeting.)

    So, we are buying time.

    I told Jim this afternoon, “If at any point, you decide you cannot go through with this treatment, or the side effects are too much for you, we will stop.” Jim agreed.

    I know that Jim is doing this for me. He does everything for me. But, I cannot bear to watch him suffer with excruciating pain. And I will not allow it.

    We have much to discuss and explore in the next few days. Much to process and sort out logically and prayerfully.

    Thank you all so much for your prayers, love, support, understanding, compassion, and being here for us. We love you and pray for you and your loved ones every day.

    Love & Light,



    Rose
    Hi Rose,

    I’m finally back and able to access internet. My trip was lovely. It was exactly what I needed and I feel renewed emotionally and spiritually after seeing all the nature. I see I missed a mountain of updates. In one update you wrote that Jim has a bladder mass. I’m so sorry to hear that. That breaks my heart. I knew someone who died of bladder cancer but he did live longer than expected. I’m sorry Jim had pain while I was gone. Pain relief should be goal number 1 right now. I think you have an excellent plan with this new young radiation Dr. I’m wondering if Jim could tolerant a bit of pain for radiation if pain was really well managed before and after each treatment? I think the goal should be to shrink the masses/tumors enough for pain relief and so the cancer doesn’t invade the whole body. Of course stop immediately if it becomes too much. When the time comes for the “end” Jim should be in as little pain as possible. I pray for the best possible result.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  12. The following 3 users say "thanks"


  13. #157
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,401
    Blog Entries
    1

    Default

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

    Thank you, funnylegs4. I'm so glad you had a nice vacation. It's wonderful to welcome you home.

    NANCY'S VISIT

    Although Dr. K said to us that Jim could have a blood draw in a week or two, he nixed todayís blood draw. Of course, Iíd already numbed Jimís port and organized all of the supplies for the draw on the dining room table. Oh well, I had nothing else to do. Nancy will be here next Friday to draw blood. We spent an hour discussing everything.

    Nexium ~

    About an hour after Jim takes Nexium, he gets tightness in his chest. He has a dry cough, dry mouth, and most of all, constipation.

    I told her about the carcinogen in Zantac. She said, ďWhy not just take TUMS?Ē

    So, this weekend, we are going to stop the Nexium, and Jim will take TUMS.

    We will see whether it helps to reduce the symptoms heís having.

    Tylenol with Codeine ~

    This is also likely contributing to Jimís constipation. Jimís description of its efficacy in handling his pain led Nancy to think that for now it would be okay for Jim to continue it, but she said that morphine actually helps with breathing. We will explore this more when Dr. K joins the conversation next week.

    Ascites ~

    Jimís waist is 41Ē today, up from 39Ē a few days ago. He just canít have a decent bowel movement.

    She mentioned Miralax, and I said, ďNo more chemicals!Ē I mentioned callyflowerís Yakima poop paste, and that Jim eats 5 prunes and 2 Tbsp of raisins daily. The only constipating food he eats is a banana with his breakfast, which Iíve cut in half the last few days.

    This constipation didnít exist until Nexium was on the table, along with iron infusions and Codeine.

    Nancy asked about getting Jimís gut drained, and she said thatís usually done by a radiologist. So, when we go in for staging on Monday, we will ask for a referral to a regular radiologist to have Jimís gut drained. Whatís one more appointment?

    Nancy also noted that as the belly swells, it puts pressure on the diaphragm, which contributes to shortness of breath. Of course, we know this, because this is what Jonathan endured for years with lymphedema and fluid retention.

    Radiation Treatments ~

    We didnít really get into that specifically, as in what kinds of side effects Jim might experience. When I said that Dr. S said that it could make his pain worse, she wondered why. Probably because the rib is involved.

    I expressed my concern that Jim will be worn out from 3 weeks of being out and treated every weekday. Jim said, ďItís only an hour.Ē The actual radiation is 15-20 minutes, but there is a lot of positioning and other things that need to be done totaling an hour.

    He didnít feel up to taking a shower before Nancy came today. We changed his PJs, and I had to help him, because he has pain, when he moves his left arm.

    How is he going to feel every single morning having to get up, get dressed, walk to the car, go in and have the treatment and be tossed around on an ultra hard surface, missing his naps, missing his regular meals, missing his med times? Up all night peeing, not sleeping properly?

    He thinks if he can rest now, heíll feel stronger. But untreated cancer does not work that way. This is not a pulled muscle.

    He is determined to try this, because ďItís my last chance.Ē

    All About Me ~

    Of course, this affects me in numerous ways too. I am in charge of Jim and getting him fed, bathed, dressed, overseeing his meds, etc. Iíll be doing this with him, and I can imagine that it will be exhausting for me. It already is, with just the appointments weíve had.

    When do I fit in cleaning the house, doing laundry, ironing his clothes everyday, paying the bills, ordering our groceries from Instacart and being here to receive them, and maintaining our home, yards, etc.?

    Even if I donít drive us there, and John or Nancy or her husband drive us, I will be going with Jim. To every single appointment.

    For the past 3 days, I have been working like a whirlwind to clean the house, take out trash, sweep down the front entry and rafters, just basic stuff, which has been left too long.

    Nancy said today, ďYour house looks lovely.Ē I just laughed. Five different colors of paint splashed across our kitchen, with a crappy piece of linoleum on the floor. It doesnít even fully cover the floor; the edges are the concrete slab. Itís not lovely. But itís as clean as I could get it, in between the other things happening constantly. Like the iPad and looking for a car. And appointments.

    There are many things, which I cannot do, when Jim is sleeping. After his treatments, he will probably want to eat and sleep.

    I am not complaining, although it may sound that way, as well as self-involved. Iím explaining the complexities of our situation. Friends volunteer to help us, but adding another person to the mix just complicates things more. Like an aide to assist with Jim. His schedule is so erratic, someone would have to live with us full time to be helpful. We canít afford that naturally.

    How Jim responds to the staging on Monday throughout the week will tell us what he can and cannot endure, I believe. I do not want Jim to suffer needlessly, if this treatment is going to debilitate him or cause increased pain for him.

    While we pray every day for a magical potion to become available to cure his cancer, we know that radiation isnít that potion.

    We are buying time, yet, we have no idea how much time we are buying. Nor what the actual cost to Jimís pain level will be.

    So, we pray for Divine Guidance. And we know that our precious Angels Jonathan and Michael are watching over us and are with us every moment.

    I will be emailing Dr. K with a condensed version of all of this, to let him know where we are and what Jim is going to need.

    Thank you for your love, prayers, kindness, support, understanding, compassion, and walking beside us on our journey.

    We love you and pray for you and your loved ones always.

    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.

  14. The following 3 users say "thanks"


  15. #158
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    154

    Default

    Compromises will need to be made. The home health agency should be able to send an aide to do Jim’s personal care. The compromise would be that you two would need to be more flexible with your schedule and willing to give up some control. A routine would have to be established and then you’d have a new normal. This would help you, Rose, conserve your energy for other things. It will also help Jim feel that he’s not over taxing you, and he’d have another set of eyes on his health.

    The radiation schedule absolutely sucks. Thousands of people are doing it, though. How does one eat an elephant? One bite at a time. Radiation is the elephant. Grab a fork. Dig in. Or not. Have you asked how much time the radiation might buy you? That might be a good thing to know.

    Morphine does help with breathing and reduces the sensation of “air hunger.” My mom was on morphine in hospice and even used nebulized morphine as her lungs were filling with fluid. She always stated that she was comfortable, which really helped us all through the process.

    As I recall, Jim has been spending lots of “quality time” on the toilet for the last couple of months. Of course the codeine and iron are exacerbating things. Have you considered adding in a dose of MOM or other med to get relief, followed by implementation of a regular bowel program?

    Think of this next phase of life as a time to maximize quality time with Jim. Self care for you, Rose, is part of that. I urge you to let home health help. Increase nursing visits to help stay on top of symptoms. Let other nurses step in, as there is no guarantee that Nancy will be available 100% of the time. Things may begin to progress faster in the next weeks and months and you two need all the support you can get. Be pro-active, flexible and accepting of your limitations. We all have them! I promise!

    Hope some of this helps.

    C

  16. The following 3 users say "thanks"


  17. #159
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006
    Location
    Detroit, MI
    Posts
    765

    Default

    hey rose!

    back in the days when part of my bowel was curled up in my pelvis, i had such bad constipation probs. it seems the longer it goes on the harder it is to get out. the doctor said, eat more fiber! i was already eating fiber, eating prunes, drinking lots of water. i thought i surely had a garden growing in my gut.

    anyways, i finally tried dulcolax suppositories once after 8 days of no bm's. one suppository and everything just moved out. i know you don't like chemicals, so maybe senna suppositories, although i think since the suppositories work right where they're put by stimulating muscles in the lower intestine, that their ingredients wouldn't go thru the whole body. i just used these suppositories if i was really uncomfortable and of course, kept eating properly and hydrating and usually things worked out.

    i know you've probably thought of suppositories. don't know if you've tried them or there is maybe some reason jim can't tolerate them....butt, i thought i'd just mention my experience .

    the more i read about nancy, the more i think that she is truly an angel sent here to earth. i wish there was a way to clone her.

    i hope peace and love are enveloping you today.
    jeannie
    Last edited by tic chick; 10-05-2019 at 12:52 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "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

  18. The following 4 users say "thanks"


  19. #160
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,401
    Blog Entries
    1

    Default

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

    callyflower ~

    Thank you for your suggestions.

    It's hard to have a routine, beyond what we currently have, when Jim is up numerous times at night peeing, and only sleeping in 2 hour segments, then napping in the morning and afternoon. During Nancy's visit, he could barely keep his eyes open.

    When we tried to get an aide to help with Jonathan, the aides would call the night before their intended visit and tell us what time they would arrive. We couldn't work that way with Jonathan, as he also had sleep and many other issues. It can't suit their schedule; it needs to suit ours. They aren't flexible. They have X number of patients to see a day, and they schedule the visits by area to cut down on driving. So, whenever they are in our proximity, that's when they schedule to be here.

    We had to do this with John frequently. He'd text me: "Is Jon awake?" If I said he was sleeping, we'd reschedule for later in the day or the following day. John was flexible. Still is, of course.

    My problem isn't with giving Jim care. It is with all of the other things that demand my time and energy. Like finding a car for us. Like getting the van serviced. Like learning the iPad and helping Jim with it, as I did today for finding the car. Like keeping the pond/waterfall working, which is very important to us as we are grieving for our boys. Like dealing with this funky computer, trying to keep it viable, and learning how to back it up. Stuff that stresses me out, but which I am forced to be doing at this most stressful time in my life.

    I have to make sure that the house is tidy for an aide or any visitor, and that is more stress on me, because there are days, when I don't have time, energy or am in too much pain to do housework. Occasionally, I leave dishes in the sink after dinner, because I just don't have it in me to unload the dishwasher and reload it. Mostly, because I have to hand wash every dish, before I put it in the washer, since we have hard water and a lousy system. Oh, that's on my to-do list too: get a water softener.

    A stranger in our home, helping Jim shower, is not going to help me with what is really overwhelming me now. Too many major things happening at one time. I sat in Jon's room today, looking all around, and at his photos on his TV. My adorable, sweet beautiful boy, always smiling and laughing. My heart is breaking. But I have to keep being strong, because I'm not allowed to be anything but strong in this life.

    For Jim and me, quality of life is being together, eating, laughing and crying, grieving, making decisions ~ together. We enjoy being on our own, so we can relax. It's not hectic when we're on our own; it's quiet. Even with John and Nancy, we feel that we have to entertain them in some way. That's not their fault, of course, because they are both angels dedicated to serving us in every way that they can. It's our nature, because Jim and I are social people, to feel like we're hosting.

    As far as finding another nurse, in addition to Nancy, our "Team" is short on nurses, and the nurses available aren't that great. I've asked Nancy about a back up, and one of them is Karen, who was Jon's first nurse after his surgery in 2005. She is wonderful, but she is in the office on weekends, and only works in the field on wound care now. Nancy is the only port/IV nurse on our Team. There is one other port nurse on a different team, but they don't cross over boundaries, because the distance between patients is too great.

    Nancy does work on her day's off, when they're in a bind, because that's the kind of loving angel she is. Unless she's ill, which she hasn't been in all of the years we've known her, or has something else pressing or a vacation, she will be here any day of the week for Jim. Nancy is a member of our family.

    Jim and I discussed not knowing how much time the treatments will buy him, and we agreed that we will ask that question of the young Dr. S on Monday, when he goes for staging/simulation.

    THE GOOD NEWS

    In the middle of the night, Jim had several decent bowel movements. This morning, he skipped his Nexium dose. No chest tightening, no dry cough, no dry mouth. Throughout the day, he's been having very good BMs. Last measurement of his belly was 39 1/2" down from 41" yesterday!

    He also has no pain today. He took his THC capsule, but he didn't take any Tylenol or Codeine. He's been up and about today. Made his decaf espresso in his beloved expresso stove pot. (can't think of the name, too tired to look) Tried to look at RAV4s on the iPad, but got lost and couldn't find his way back, and the iPad needed to be charged. I got it all set up for Jim, found the dealer and the Express Service for RAV4s, but he couldn't get the hang of it. I was washing his new sweatpants, so that they'll be all ready, whenever treatment starts.

    He's been moving well, took a shower on his own, and then I helped, because ... of course. No pain. A little ache, but no pain. This is great. Will it continue? I don't know. But Nexium is off his drug list now, and Dr. K will get the full report from me. I got out the TUMS.

    I knew Nexium was going to be a problem for him. I knew it. I did it against my gut, and he suffered. Always trust your gut.

    I think I know my limitations, and I know that I've been pressing them further for my entire life. I don't know how to relax, and nothing can be done about that. Our son died in April, and since then Jim's health has been a roller coaster ride. Our freaking tax returns were stolen, and I had to deal with the police. Now, I have to find us a car and negotiate it all on line.

    Thankfully, the neighbors with the barking dog have their home up for sale. The dog is gone on the weekend for open houses, and it's so blessedly quiet.

    My flexibility is centering everything around Jim's needs. It's the only way that we can manage what we're going through. I know that thousands of people are going through what we are, and worse, many without the great health care Jim has. Everyone has a story. And while stories may have similarities, each story is unique to the individual. Every story is just as important as every other story.

    I ordered Jim senna leaves and senna tea, which will arrive tomorrow. He wants to try the tea alone, since he already eats prunes and raisins every morning. If that isn't enough, I'll make the paste. Thank you for the recipe!

    tic chick ~

    Thank you for your suggestions too.

    Jonathan and Michael had chronic constipation, and I belonged to 3 different G Tube forums, from which I have a list of tried and true constipation remedies. From celery water to molasses, I've tried it all. Not to mention bowel softeners, Dulcolax, enemas, mineral oil, glycerin suppositories ... yeah, we've tried it ALL.

    I think the key was getting rid of the Nexium, and maybe the iron is done doing it's deed on the bowels now. Because Jim is producing normally.

    As I said, no pain, which also worsened after taking Nexium for the first time, or the other aggravating symptoms.

    Well, The Game is in progress, so I need to change into my gear and join Jim to root for our team, as we've been doing for 27 years.

    Thank you all for your love, prayers, support, advice, and walking beside us. We love you and pray for you and your loved ones.

    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.

  20. The following 4 users say "thanks"


Page 16 of 23 FirstFirst ... 61112131415161718192021 ... LastLast

Similar Threads

  1. Starting this Journey
    By mom2hunter in forum Child Neurology
    Replies: 2
    Last Post: 04-27-2017, 06:57 AM
  2. Who Else Has Questions About Their Health and Spiritual Journey?
    By NeuroNixed Craig in forum Multiple Sclerosis
    Replies: 28
    Last Post: 08-29-2012, 01:16 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.