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My Husband, My Life, My Love, My Family, My Cancer

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  • mara51506
    mara51506 Member Posts: 6,246
    edited November 2023
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    Made a second post. I did have a lovely time, must remember to order an appetizer or side instead of a full meal, ate the salad and chicken but could not eat the fries, gave them to DB, will look into that. I did keep a doggie bag of salad. Mistake I made was drinking pop so had a broken sleep between living room and then the bedroom around 5 am but I feel pretty good today. We went shopping and the cats were the expensive ones this time, their stuff alone was 60.00. I got more bagged salad as I am liking that very much. I am going to have to go through my canned items and start eating through them, I don't have storage enough and just keep buying. Eggs, milk and meat should be all that I need.

    I did buy queso, been a long time. I want to make a small bean, beefless ground fry in the frypan, add little mexican spice and rice. Top with some dried stuffing mix, they really do function as extra croutons for me. Have to use small amounts of each as well so I can finish it all, figure out something before app't tonight. Bus should be fine assuming stop is in service, weather has been dry to no major mud to contend with and the sidewalks have the protector taken off so they are plain sidewalks, not bad to get the short distance to regular streets. So glad this is almost done, just need asphalt on the roads. Taking your pocket duty with me as well for the CT scan.

    Hoping everyone has a good day and in pockets for my friends who need me as well.

    Edited to add, breakfast was a giant salad meal since I wanted to eat up my doggie bag which also contained chicken in the salad and had a bunch leftover in salad spinner. I am finding that greens last much longer in a spinner due to moisture dripping to bottom of bowl. Anyway, add lots of caesar dressing and croutons and it was very good. Will probably do the mini bean and beefless ground mixed with queso. If I am not hungry enough, make a couple of eggs.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Thank you, everyone for your support. I've had many incidences of deja vu, but this was the worst. Am glad DH was there to catch me. I've never fainted (if that's what it was) before. It only lasted a couple of seconds, but I remember him grabbing me and asking if I was OK.

    The neurologist's office called me and I will see her via video visit at 12:30 today. I'm going to ask for an MRI. I'd prefer stat, but we'll see what she says. I don't think was related to the procedure the day before, but maybe I'm wrong. I've never had this happen after any of my other procedures.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    I saw the neuro doc. She's putting me on an anti-seizure med. I'm so upset. She said early on that this might be coming, but I didn't want this to happen.

    She also ordered a stat MRI but said that priority is usually given to ER patients. I decided to call ancillary scheduling and spoke with an absolute angel there. She found an opening at 10 am tomorrow so we grabbed it. D and I were going to drive out to see my dad tonight, but we'll go tomorrow instead.

  • eleanora
    eleanora Member Posts: 299
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    Good evening to the loving and lovely ladies of the living room. Sorry not to have participated for a while. I have checked on you as often as I could, cheering for the good news and sympathy and strength for the not so good, but pain kept me from typing or using my arms in most every way.

    The pain started in August, 2022 in my mid back and became progressively worse, interfering with sleep and preventing me from activities that required arm movements. I would sit with cushions under each elbow as even the effort to elevate my forearms would hurt. Couldn't knit, hold a book to read, or go for walks. Repeated scan reports over a 10 month period mentioned only small sclerotic spine mets which were ruled out by my MO and an orthopedic physiatrist as a possible cause. An MRI of the spine showed no cause. I was offered prescription pain meds, but was terrified to take that step. Finally, the report from my routine scan in July noted multiple sclerotic posterior rib mets in exactly the areas where I felt pain. Saw my RO and had 5 sessions of palliative radiation in September. The pain has improved tremendously and the RO says that I may see a little more improvement. My nerves and muscles are no longer being scraped over rough areas

    I made an appointment with my MO and requested to review the scans of the area from September 2022 forward. The mets had been there all that time, same size and always sclerotic, visible even to me. The radiologist had just not bothered to report them.

    Sorry for such a long post, but I wanted to share the details in case anyone has a similar problem and this might help.

    It's good to be back 😀. Happy belated birthday Mara!


    Eleanora

  • intolight
    intolight Member Posts: 2,240
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    Eleanora, I am not sure how to even respond. I am sure you are frustrated and a little upset, but I am so glad you are finding relief. Thank you for thinking of others in the midst of your own pain. Praying for continued relief as you move forward.

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Eleanora, ditto on what intolight just wrote. I wish I had the perfect words that could fix everything, but since I don't I hope it helps to know that you are cared for here.

    (((hugs)))

    Carol

  • eleanora
    eleanora Member Posts: 299
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    Thank you Carol and intolight. Things are improving and I have hope that they will continue on that path. Your kind words are very helpful.

    The physical pain was difficult, but others have experienced much worse. I think the most difficult part of all of this was the carelessness of the radiologists who repeatedly failed to read the scans and report on them accurately. Just because we are stage iv doesn't mean we are less entitled to competent medical care.


    Eleanor

  • micmel
    micmel Member Posts: 9,969
    edited November 2023
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    Good to see you Elenora….I’m sorry you had such pain to deal with. I’m sorry you didn’t have doctors figure out sooner what was bothering you. I’ll be including you in my thoughts. So many of us are struggling. I’m sending out good wishes to all.

    emac.~ I’m glad you had some good news to share. Love good news.

  • irishlove
    irishlove Member Posts: 527
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    Good evening all. Nice to see you @eleanora Looking at my own scans I notice the Radiologist only posted limited info from the MRI of the spine. How can we get the proper care if they are in a hurry and only give limited info. I'm so glad to see you here. @sunshine99 Thinking of you and hoping that MRI is clear. In pocket for scans and all your needs. Thank each and everyone for caring so much. It picked up my spirits tremendously.

    I'm back in my favorite chair, bruised and tired but have some info to share. A 30 day nurse supervisor called me and I had asked her a few questions. The answers will help you advocate for yourself. A. You can decline any medical procedures or meds, they can't force it on you. I declined IV protonix, lab test when the last test was only 2 hours before and no results were posted and a pulse ox as my rate was 98 the whole time. Turned out to be an error. B. Found out I can request nurse supervisor to use an ultrasound machine to find "hidden" veins instead of 3 and 4 sticks. C. No Pik line but can ask for a halfway line. I need to find more info on that procedure. D. No more morphine, hated it and thought I was dying as the room went black. She recommended Fentenyl, which of course carries bad publicity but is very controlled in the medical field and easier on the body.

    Gonna spend a few days in bed and hope to build up stamina. Cancelled Pet scan and Mondays Zometa infusion, injections and labs.

    Hope tomorrow brings you and yours a beautiful day to make some wonderful memories.

    Laurel

  • mkestrel
    mkestrel Member Posts: 167
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    @eleanora careless? That's malpractice! I have a pathologic rib fracture from Mets and relate to how painful it is. I'm glad radiation has helped your pain.

    I just got back from a much needed hot springs soak. Wishing all a good night's sleep.

  • chicagoan
    chicagoan Member Posts: 1,004
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    Happy Birthday, Mara!

  • mara51506
    mara51506 Member Posts: 6,246
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    Sunshine, I am glad the anti seizure drug is being given. If you find you are too drowsy, they can also update the drug as they usually start with Dilantin. In you pocket and you probably had the MRI so in your pocket for news afterword.

    Eleanora, thank you for sharing that information, it is vauable information and so glad you are feeling less pain. If you kept up you know I am a blabbermouth on the keyboard myself. I am angry the radiologists missed it and caused you undue pain.
    I am thinking a malpractice suit is in order.

    Thank you Chicagoan, I am unsure what I want to do today, I could get myself a gift on amazon or order a dessert for delivery, I am not sure yet.

    One gift I got is the sidewalk was completed at the end of my street making it easier to get to the bus stop, Once asphalt is applied, will be taking the paratransit. For now, bus is better than UBER. Had the contrast free CT scan, really was in and out quickly, will wait to hear about an app't. Putting out of mind for now.

    Planning to eat a fair bit of salad and pasta, beans and other things, not sure how it comes together quite yet.

    I hope everyone has a good day and in pockets of those who need me, glad next week is not busy, will be nice to do what I want. Most I am doing outside house is getting mail tomorrow.

  • seeq
    seeq Member Posts: 1,128
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    Sunshine - I'm so sorry you're having to deal with something new and scary. It's good that you happened to get in for an MRI already. Hopefully, the results will be quick and good.

    Eleanora - how frustrating that the radiologist didn't note your bone mets in his report. I can't even imagine. I'm so glad the rads are working.

    Irishlove- Happy to see you're out of the hospital. Thanks for sharing your tips.

    Thursday, we went to Fort Worth for DH's pre-op appts. We stayed the night, so we could have dinner and drinks in the Stockyard with my daughter. Quiet day today.

    Waving to everybody in the living room.

  • cookie54
    cookie54 Member Posts: 741
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    Mara Hope you enjoyed your birthday and the sidewalk is the perfect gift!

    Sunshine Ugh I'm so sorry for all the crap you have been dealing with. I understand it stinks to be on seizure meds but am glad to hear that you got swift attentions from your docs. Hope you had a good visit with your dad. Hugs.

    Seeq Glad you were able to combine your DH appt with something happy like a dinner with your daughter. Hope his pre-op testing is crystal clear.

    Eleanora Sorry to hear about lack of thoroughness you experienced it's totally unacceptable! They need to read everyone's study like it's their close family member and not rush. I hate the changes in medicine I have witnessed over the years. Anymore it's all about the numbers and not patient care! Glad to hear you have pain relief with the Rads.

    Irish Hope you're continuing to feel better and relaxing in your favorite chair.

    Waving hi to all you lovely ladies here and wishing you a peaceful day.

  • bellelove70
    bellelove70 Member Posts: 38
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    Hello to all. It has been awhile but I do try to keep up on the posts. I too cheer for the good scan reports and pray for strength to deal with daily struggles .

    Mara- Happy belated birthday wishes! 🎂 I celebrated my 70th birthday on November 2nd. When is your scan?

    Sunshine- what a scary time for you. So glad your husband was there. All you need is another medication right now when you are having such a difficult time swallowing. Get all the proteins you can and rest while waiting for your MRI.

    Irishlove- what a terrible time for you also. Glad you are home and in your comfy chair.

    Emac- yay! Some good news finally. Hope you enjoyed time with your friend. How is your mom?

    Eleonora- I guess the radiologist thinks why report something else for stage 4 patients- NOT!! I often wonder about my scans and the information I'm given. I always check and recheck with my MO. Anyway you look at it, it is negligence.

    Mae- hope you made it home safely. Driving at night is a bugger especially without your glasses.

    Mel- hello 👋 hope all is going as best as it can.

    I have been busy making my winter and Christmas wreaths. My husband wonders when it will all stop but happy I am keeping busy.

    My son loves to blow out the candles.

    Even Belle was looking at the rainbow.

    Thinking of you all!!

  • micmel
    micmel Member Posts: 9,969
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    Happy belated Birthday Belle. Good to see you!

  • mara51506
    mara51506 Member Posts: 6,246
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    Thank you for the birthday wishes, I did not buy extra food but instead ate more salad and fried beans and beefless ground crumble, I just overcook them a bit with some of the queso and mexican spices. Figured better as a crumble vs salad on top of liquidy beef texture. Queso works better for me in the frypan, just need a tablespoon or two to add. My favourite bagged salad has to be the one with corn, little strips of taco and other stuff, adds a lovely crunch. I don't like the avacado caesar that comes with but did not bother to open that as I do not enjoy avacado. I am addicted to caesar dressing but do not feel bad about that. I also find the lettuce lasts much longer when stored in salad spinners as the extra liquid just goes to the bottom.

    I did make a 1/4 cup bean and wheat bran, send through chopper, same texture as the beefless ground. Put in frypan with some queso, put in bowl. Added left over bag salad, croutons and ranch dressing, all came together well, probably will fill me up but healthy and full of fiber. Very tasty too.

    Today, debating the mailbox as I have not checked it for a while and always better to avoid contruction machines on the road, then may go to the mall on bus for a mall walk, we will see. Want to finish laundry first and the main household chores.

    I imagine I will get a call about seeing the RO for results on the bleed and whether anything needs to be done or have the occasional CT scan to monitor, I will say I don't notice any real symptoms, I am also not worried if it can be treated, brain surgery was fine for me. I still wonder if bumping my head caused it but who knows. Still going on with life regardless.

    Hope everyone has a good day and in pockets for anyone who needs me.

  • irishlove
    irishlove Member Posts: 527
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    Good evening all you lovely ladies. In pockets for all your needs. Hoping all of you are doing well and enjoying the fall weather.

    It's 65 here tonight, just lovely. All honesty, I haven't been outside at all. Spending time in my bed binge watching Last Man Standing. Ah, humor is the best medicine. Still overly tired. My legs are weak. Tomorrow is GP appt., so I have to get my act together. I'm cancelling injections, treatments and labs. I cancelled the pet scan that was due last week. I am so bruised and still on antibiotics. The colitis does seem to be settling down. Hurray for that.

    Thinking of you all.

  • shanagirl
    shanagirl Member Posts: 380
    edited November 2023
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    Good evening lovely living room ladies🩵💗.nothing much to update you with. I spent the weekend babysitting my Oldest DD’s dog while she moved int a new place. He’s a big mush Old English Bulldogge.. His name is Harlo.

    @eleanora thank you for sharing your story about your pain resulting from Mets on your ribs that was not reported by your radiologist. I have mets on my ribs and I understand your pain. When I was first diagnosed with bone mets the radiologist was very detailed about where, and the size all my mets were. I have them on my sternum, thoracic lumbar and sacral as well as my ribs posterior and anterior. I ended up looking it all up and identified visual pictures of each spot where they were located, and I know exactly where the pain is flaring up when I have pain. I’ve noticed that since the original scan, the radiologists don’t report much detail and are vague compared to the first scan, they just say “unremarkable”, in the Impression. I want detail on each scan. Even if a met is 1 mm increased or decreased.

    @bellelove70 Hey girl Happy Birthday. I love the pictures🥰

    @irishlove I’m glad you are home from the hospital.

    @sunshine99 Good that you got stat MRI appt. I hope you will have more answers. It’s got to be so scary worrying about siezures, and what is causing them.Hopefully the medication will help with your anxiety.

    @micmel Hey there girl. Give some extra cuddles to Theo for me. Have a restful evening.

    @cookie54 Hey Jersey💗

    So goodnight all

  • sunshine99
    sunshine99 Member Posts: 2,687
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    Well, so much for my stat MRI. The equipment was down and the receptionist told me the next available appointment was for DECEMBER 17! She didn't care and wasn't her problem. I will call scheduling again when they open at 8 am. Sheesh!

  • shanagirl
    shanagirl Member Posts: 380
    edited November 2023
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    Oh how frustrating @sunshine99 !!! Can you just go to the ER? They will have to give you an MRI then. That is what my Neurologist told me to do when I had that hearing issue. My history made the ER obsessed over my brain and they tested everything.

    So good morning everyone. Today I’m so frustrated because my scalp has been so sore and uncomfortable and it hurts to brush my hair or tie it back. Is this a sign I’m going to lose my hair? it’s already gotten so thin since being on the Verzenio pills and Xgeva & Faslodex injections. I hate this🙁. I’m taking Biotin and Inositol supplements.

  • mara51506
    mara51506 Member Posts: 6,246
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    I'm sorry about the MRI machine being down but unacceptable to wait until Dec 17th. In your pocket anyway.

    Doing some housework, laundry and went outback to pull out my garbage can to put two bags in, some jerk filled it up so have to take 3 bags out myself which is difficult. Asked the managers for help with trash takeout as I find it difficult and reiterated my disability and cancer, can't hurt to be upfront about it all. Will see what they say, if not so be it then. I checked the price of garbage cans but they are too expensive for me and would want to keep indoors where there is no space at all. Oh well, worse things happen I guess.

    Not sure on food today, thinking eggs for this morning with cheese and little beefless ground along with chopped hashbrown. I think then get changed and go for walk down the street to see if that end sidewalk is done too, would be good to know.

  • candy-678
    candy-678 Member Posts: 4,141
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    Sunshine—- How about another place for the MRI? Like another hospital, or an out-patient imaging center? I would think that if your hospital has an MRI that is down, and booked up for so long, that you could go to another place, even if you have to travel a few miles. Just a thought.

  • micmel
    micmel Member Posts: 9,969
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    That’s annoying sunshine. It’s always something, don’t they understand that it’s very difficult for us to come to these appointments? Ugh!

    hello to Candy ,Shana intolight,Irish, Mae, emac , Goldens, mkestral, Mara, cookie, Elenora and Belle. Love the pics!

  • mara51506
    mara51506 Member Posts: 6,246
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    Well, got my garbage out with help from a neighbour. I had got it downstairs out back but he saw me struggling so he carried it over out front for me, going to have to keep garbage smaller somehow.

    We are supposed to get asphalt on the road tomorrow, we will see, if that is the case, paratransit should be a go for me by next week I think. Last step will be to put the edge of driveways back on but the worker said that is a different company.s

  • sunshine99
    sunshine99 Member Posts: 2,687
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    I talked with the scheduler today who was really nice and really helpful. I told her I would go to any location for the MRI. Scripps has several of them. She got me a spot for the Monday after Thanksgiving but said she'd keep checking for one even earlier. She found on for the Sunday before Thanksgiving, which is six days away. It's at the same location as the one where the equipment went down, so hopefully this will work this time. Fingers crossed!

    Thank you, everyone. Your support means so much to me!

    Carol

  • cookie54
    cookie54 Member Posts: 741
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    Sunshine Always something right… so glad you found a compassionate scheduler to get the appt. sooner!

    Shanagirl When I lost my hair before my scalp was so painful. I swear every follicle of hair hurt! I'm sorry your uncomfortable it just stinks, hugs.

    Mara Glad a helpful neighbor was able to lend a hand with the trash. Hope the asphalting is done quickly and you can get back to easier trips out your door.

    Hope everyone had a decent day and wishing all a restful night.

  • irishlove
    irishlove Member Posts: 527
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    Hello all you sweet gals. In pockets for all your needs. I hope you are all enjoying a beautiful fall day. @sunshine99 Sure hope they can get you in asap. This waiting is ridiculous. Glad the scheduler cared. That other person needs to find a new job. Life is difficult and caring should be priority for patients needs. @mara51506 Oh so anxious for you that the road is done soon. I was gonna suggest a trash compactor and if you are a renter, get the landlord to pay for it.

    I rescheduled my Pet-scan and labs, injection and infusion of Zometa. Saw GP today, who I adore. He's gonna refer me to Orthopedic Dr. to help with spinal problems (no radiation needed but severe bulging causing this pain). He also set appt. to clean my ears. I did the Colasce and rinse. One ear is ok, other ear still clogged. Thought I was done with antibiotics, but hospitalist wants another 5 days. No Ibrance till Sunday. Feeling better, but tired. '

    Looking forward to full house soon and Thanksgiving and the National Dog Show.

  • shanagirl
    shanagirl Member Posts: 380
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    Good morning everyone. I’ve been reading thru and keeping up with each one of you. I’ve been doing this each day so I can be in each of your pockets every day. @irishlove I’m glad your GP is sending you to someone to unclog your ear. It sucks and uncomfortable when it gets blocked. I love to watch the National Dog Show and Westminster on TV. Dogs are just so awesome.🐾🥰;…I love them.

    So tomorrow I go for my appointment with my Oncologist, Labs, injections. I want to ask him about my rib pain. I have mets on T10 T11and T12 and also on Ribs 5 and 9 Anterior and Posterior. I know they are all kind of in the same area. The pain sometimes wakes me up at night and also when I bend. I’ve had broken ribs around 12 years ago and know th pain. I’m hoping there is no progression…that is always on my mind. So between the bone pain, my painful scalp and hair thinning, and the constant GI discomfort, I haven’t felt well or wanted to go out. Also I’m aprehensive about Thanksgiving with all this going on with me☹️. So I want to say hi to you all and as I sit here with my coffee and IPad I’m wishing each one of you a calm painfree day. @sunshine99 @mara51506, @micmel , @eleanora, @goldensrbest , @cookie54 , @emac877 @seeq , @candy-678, @bellelove70 , waving hi to you all and everyone I may have missed. 👋🩵♥️💙💗🥰🐾including fur babies😘

  • keris113
    keris113 Member Posts: 45
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    @shanagirl that is so frustrating that you are experiencing those symptoms, especially around the upcoming holidays. Hope you are able to find some relief soon!

    @sunshine99 Glad that your scans were able to be moved up! That is frustrating as well dealing with schedulers and feeling like they don't care or that this is important to us.

    Hello to everyone else and hope all have a great day!