INSOMNIACS place to talk in the wee hours

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  • jaymeb
    jaymeb Member Posts: 276
    edited August 2018
    Sas, Mags, Kathindc, Loverly, Feelingfeline, Shepkitty, TaRenee

    Everything ok? Just checking in. Hope all is well.
  • jaymeb
    jaymeb Member Posts: 276
    edited August 2018
    Smarty and Susan

    The girls are sooo cute. I miss those toddler years with my daughter. It goes too fast.
  • JunieB
    JunieB Member Posts: 1,023
    edited August 2018

    Hello Fellow Insomniacs,

    I saw the Mayo neurologist & neurosurgeon this morning. After my initial eval. they told me I am NOT a candidate for the surgery the neuro back in Oregon had proposed doing. It is a VERY massive surgery requiring my chest being opened up to access my spine.

    My tumor is still contained within my vertebrae, but not yet affecting my spinal cord or any of the nerve roots coming from my spine. I am having an MRI tomorrow to see better what is going on, before they make any suggestions as to alternative/less invasive treatments.

    They said that with a few exceptions, they DO NOT use bone scans to follow a patient with mets to the bone. Mayo uses MRI & PET almost exclusively. They said that bone scans tend to show too many false positives, and therefore are unreliable.

    Also, for some reason my L5 is lit up like a Christmas tree, so they want to check that out as well.

    I am glad I did not have the surgery back home. The neurologist said they see lots of patients that come to Mayo after having spine surgery for cancer after their local surgeons have messed them up and need corrective surgery.

    It is soooo hot & humid here. I do not know how people survive here. However, some locals told me that the weather at this point is pretty good compared to what they have usually. Yikes!

    Ok, that's all for now. Goodnight everyone.

  • JunieB
    JunieB Member Posts: 1,023
    edited August 2018

    Hello Fellow Insomniacs,

    I saw the Mayo neurologist & neurosurgeon this morning. After my initial eval. they told me I am NOT a candidate for the surgery the neuro back in Oregon had proposed doing. It is a VERY massive surgery requiring my chest being opened up to access my spine.

    My tumor is still contained within my vertebrae, but not yet affecting my spinal cord or any of the nerve roots coming from my spine. I am having an MRI tomorrow to see better what is going on, before they make any suggestions as to alternative/less invasive treatments.

    They said that with a few exceptions, they DO NOT use bone scans to follow a patient with mets to the bone. Mayo uses MRI & PET almost exclusively. They said that bone scans tend to show too many false positives, and therefore are unreliable.

    Also, for some reason my L5 is lit up like a Christmas tree, so they want to check that out as well.

    I am glad I did not have the surgery back home. The neurologist said they see lots of patients that come to Mayo after having spine surgery for cancer after their local surgeons have messed them up and need corrective surgery.

    It is soooo hot & humid here. I do not know how people survive here. However, some locals told me that the weather at this point is pretty good compared to what they have usually. Yikes!

    Ok, that's all for now. Goodnight everyone.

  • bella2013
    bella2013 Member Posts: 489
    edited August 2018

    JunieB, which Mayo location are you at

  • M0mmyof3
    M0mmyof3 Member Posts: 9,696
    edited August 2018

    Hi all! Been busy again so life has kept me away from here. Will check in more.

  • JunieB
    JunieB Member Posts: 1,023
    edited August 2018

    bella2013 - I am at their Rochester facility.

  • bella2013
    bella2013 Member Posts: 489
    edited August 2018

    👍. You posted how hot and humid it was and I thought you were at Mayo here in Jacksonville, FL. It is really hot and humid here.

    Prayers for you and your team of doctors🙏

    Barbara

  • kathindc
    kathindc Member Posts: 2,042
    edited August 2018

    Junie, sounds like you’re in good hands. Keep us posted as to what the Mayo’s plan of action will be. Keeping you in my thoughts and prayers.

    Susan and Smaarty, so glad to see you posting again. Missed seeing pictures of your munchkins! My how big they’ve gotten. Such cuties.

    Sorry I’ve been MIA but my husband’s health spiraled rapidly downhill and he passed away last month. Been busy taking care of all the paperwork. Thank goodness we bought our cemetery plot and pre-planned our funerals years ago. Made that part easy and highly recommend doing that.Next up is updating my legal papers and giving my children copies of everything. Will add an advance directive as my husband had always indicated he would be a DNR but had no paperwork on file at the hospital when he coded and that was on the one day I decided to go see him a little later than I had been. I have such mixed feelings on that. If I had been there, I could have told them his wishes but I don’t think I would have held up well when he coded. DS is a civilian social worker on a military airbase and told me some of the guys have DNR tattooed on them. I’m seriously thinking of doing that in case my advance directive isn’t on file or with me at the time it is needed. Don’t want to put my kids through making the call to let me go. My neighbor’s DIL is an EMT here in the city and looked into it for me. They can now honor a DNR if it is worn or tattooed on the patient without having to go through a supervisor.

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited August 2018

    Kathy- I am so sorry about the loss of your husband. Sending much love to you and your family during this time of loss

    You make some very good points about the DNR

  • Wren44
    Wren44 Member Posts: 8,585
    edited August 2018

    Kathy, Sorry to hear your sad news. Love and peace to you and your family.

    I knew a man at the senior center who wore a bracelet that said DNR. He had a history of heart problems and didn't want to be brought back again.

  • M0mmyof3
    M0mmyof3 Member Posts: 9,696
    edited August 2018

    Kath, so sorry to hear about your husband's passing.


  • JunieB
    JunieB Member Posts: 1,023
    edited August 2018

    kathindc - I am so sorry to hear that you lost your husband! I'll be praying for you as well.

  • susan3
    susan3 Member Posts: 3,728
    edited August 2018

    kathindc....so sorry to hear about your husband. My prayers are with you.

    Smarty...beautify picture

    I have a pretty DNR bracelet. Right wrist cause that is where they take pulse I was told. It is actually pretty cool. It is made so it doesn't slip going around your wrist. So the ID part is always on the inside, where they would do your pulse.


  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited August 2018

    KathinDC: my deepest sympathies. If that were my reason for being absent from the boards...I would still be absent from the boards. [Husband] and I send you half of our love for one another.

  • kathindc
    kathindc Member Posts: 2,042
    edited August 2018

    Ladies, thank you for your prayers and condolences. It's helping me immensely with the healing process of loss.

    Susan, I was thinking of the DNR bracelet or necklace and adding my medicine allergy and two of my health issues that I'm most concerned about in case I'm incapacitated. Still leaning toward the tattoo as a back up. May I ask where you got your bracelet.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2018

    Jazzi----so sorry I didn't respond, I was here for my B-day and haven't been back. YES , I have missed you , very much, Immensely much. You have such a great kindness towards others and great visual artistry. I hope you decide to stay here again..
    I have taken multiple breaks b/c BCO is not a healthy place for me to be. Sounds weird. But it's not. I smoke too much and I drink too much wine when I'm here. I, also, don't do the political thing either for the same reason. 

    BUT JAZZI, I'm so happy you are back. Hope you stay here forever.  Please, also, bring your photo artistry here. The "EYE" of the artist with any medium is a gift. You have a such a great gift :)

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2018

    Kathy, So sorry about Dear Husband, I sent a PM. It sucks to lose any one, but spouses and kids...……..
    The Victorian year of grieving, is not talked of now, but it really does have value for understanding grief. I sent a pm. . Girl so sorry. So sorry. No matter how much our spouses make us crazy. If we lived with them for decades. They're loss is heartbreaking.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2018

    SUSAN WHOOohoooooooooooooooooooooo OMD OMD OMD  Okay let it fly OMD OMD OMD you are here Let the tears flow. I screwed up. Bless you for coming back. I will try not to screw up again

    Smarrty you are here too. Pictures too!!!! I'm tearing up. OMD she is beautiful

    Okay update Dear son Stephen and Jamie are prego. Got married 01/11/17.. Prego one month after going off the pill. Due date Jan 29th 2019


  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2018

    Perhaps...…………….

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited August 2018

    Sassy- just not here as much but will stay and pop in as I can. Going on a trip shortly to my high school reunion so I will be gone a few weeks but back in September.

    Enjoy the rest of August folks!

  • susan3
    susan3 Member Posts: 3,728
    edited August 2018

    Kathincdc, the place is Lauren's hope. Not cheap.....but many designs. This is mineimage

    The underside is the ID ta

  • susan3
    susan3 Member Posts: 3,728
    edited August 2018

    hi all. Hope everyone is having a great day. I had lazy lazy lazy day.

    Daughter is due with her second child next month......yeah

  • JunieB
    JunieB Member Posts: 1,023
    edited August 2018

    Hello everyone,

    The MRI went well on Wednesday. On Thursday I went to the Neurology Dept. (without an appt.) and asked if I could get an appt to speak to the neurologist. They asked me to wait in the lobby and approx. 30 min. later I was called in to see the neurologist. I waited another 20 min. and the neuro came and showed me my MRI results. My tumor can be seen in the center of my T11, plus I have spondylosis in my Lumbar spine (it's a mess, but no cancer in the lumbar spine).

    The neuro and I had an in depth conversation about cryo-ablation of the bone & vertebroplasty, then he made several phone calls right there in front of me. The one doctor here who does this procedure is out of the clinic until the 23rd, but his nurse called him and he agreed to do it. So I'll be here another week. I have 3 appts. on Monday, 1 on Tuesday, none on Wednesday (so far), procedure on Thursday, plus I'll probably spend the night in the hospital since this procedure is done under general anesthesia.

    Discharged on Friday, PICC line removed, then I'll return to the hotel and rest for the rest of the day & Saturday. Then on Sunday I will fly home to Oregon.

    I have been incredibly fortunate to get all of this accomplished in 2 weeks. The Amer. Cancer Soc. was able to help me with 8 days of my hotel stay, but today they let me know they are unable to help with the last 5 days. So I will have to pay for those days. Even so, I am thankful to have this opportunity.

    Yesterday I made several phone calls back home to see if there is any doctor who performs cryoablation of a bone w/ vertebroplasty, but I couldn't find one. There are doctors that do Interventional Radiology back home, but none that are Neuro-Interventional Radiologists like the doctor here at Mayo. So it is worth staying here to have it done here.

    It rained a bunch yesterday and was much cooler & pleasant here today.

    While Rochester is a very nice and clean city, the cost of living here is very high. One nurse told me that the amount of money here in Rochester is mind boggling and that is why it costs so much to live here.

    Okay, that's all for now and I will bid you all goodnight.

    JunieB

  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited August 2018

    Susan and Ms. Smaarty!!!! So happy to see your posts . Evie and Elena are adorable! Next month already Susan? Wow! Time does fly. You had a lazzy lazzzzzy day? 👍

    Dear niece a year ago.

    image

    Most recent picture of her.

    image

    She is full of energy. A little monkey. I am glad her mom listened to me and put her in gymnastics.

    Junie, I am happy there is a plan to fix you...I mean your back. Hah! I misunderstood you the other day. Actually, I am glad you are not a candidate for the other surgery. Thanks for the updates here.

    Kath, oh dear Kath.....my deepest sympathy for the loss of DH. They said that the death of a spouse is the most stressful thing. Second is divorce. I think about you often too.

    Ms. Wren, i hope your DH is on his way to recovery.

    Shower is calling my name. Ta ta for now.

    A big HELLO to my other Sisters....

  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited August 2018

    Junie- good to see you are getting excellent care and have a plan now too. Sending you much love for a good procedure with excellent outcomes.

    The pics of the little ones are so lovely!

    I am going out of town and will be off line for a few weeks but will check back in here by Labor Day weekend. Until then, wishing you all the best for the rest of August!

  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited August 2018

    Jazzy, have a fun and safe trip. I am afraid to go to a high school reunion. I went to a concert a few months ago to see my favorite band (Depeche Mode). As I was waiting for the concert to begin, I was people watching and was thinking to myself these folks graduated high school around the same time I did? Oh my, that can't be. Where has the time gone?

  • Meadow
    Meadow Member Posts: 2,007
    edited August 2018

    Hi ladies, I have been off the boards awhile, but I have popped in here in the past, and I wanted to share my joy. I am celebrating 5 years cancer free, 5 years since diagnosis with Triple Negative Inflammatory Breast Cancer. I feel very blessed. Just wanted to share. My prayers and hugs to all who are in treatment, new diagnosis, experiencing loss.

    image

  • dsgirl
    dsgirl Member Posts: 276
    edited August 2018

    Congratulations Meadow, I know the feeling is just great.

    Dsgirl

  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited August 2018

    Meadow!!!! So happy to see your sweet face. Even more happy with your milestones. Lovely picture. I get to do it in 12 months :) Finger crossed.

    Dsgirl- hej! Hvordan har du det ? Ok, that's all I know. Don't answer in Danish.


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