Facing the Future

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  • ranD
    ranD Member Posts: 373
    edited April 2009

    Ok, scheduled for pleaders on Tuesday.  A little apprehensive, especially since this week's newest symptom is a panic attack in the middle of the night.  I wake up and my whole body is shaking, it starts with my legs and then works up to my arms.  he first time this happened was about 10 days ago when my lungs filled up and I had trouble breathing.  We ended up calling 911 and they rushed me to the hospital and tried to get me to calm down with morphine...lol...that just made it even harder to breathe, and then someone gave me some ativan and within 10 minutes I was stable.

    last nights attack happened in the middle of a dream,lol, I was telling off some lady who was yelling and ignoring her kid and explaining how much I would give to be able to be with my kids again, when I woke up shaking.  i am starting to think that somehow my body is producing too much adrenaline if I stress even the smallest amount.  Anyway, stuck the ativan under my tongue and 10 minutes later all better,

    Now I am starting to feel like some psycho who has insane panic attacks for no reason, I have never been this way before, I am usually pretty even keel, but lately i think its starting to get to me.  The thought of 10 days in the hospital and 10 nights without some family member there is pretty scary...any thoughts?

    It probably doesn't help that I have to get the advance directive and my will updated tomorrow as well as thinking about what to write to my 6 year old.  He's the last in the letter series, but when my 22 year old and his wife heard what i was doing they wanted one too....so now i have to find the time and I just am not in the "mood" and that makes me feel like a crappy mom .  I start thinking the last time for me to do this and the last time for that.

     i know the surgery has a higher success rate in the 70s, hell that is better then chemo, but then I start worrying about the pain, the doc just kind of said there are meds for it...great, but what can I expect, he just said everyone is different..errrrrrrrr...

    I This is sucha  total whine letter please forgive me...but it just keeps coming out onto the keyboard..lol..

    end of rant, randie

  • EWB
    EWB Member Posts: 2,927
    edited April 2009

    Randie- rant away! I suspect it will be much better to get "it" out than trying to be a good (fill in the blank) and feeling like you aren't only adding to the stress. Remember to stop and breath (really breath). Don't worry about what you ought to do or what you should do....

    gentle hugs and prayers

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    If you call that whining you havent spoken to me.  Geez... we all know there are a pyramid of chemicals just waiting for you to end up being out of control, without someone one  like me.... careful to maintain the early morning eating and my morning medications.  I apologize to anyone who I have been nasty to, so early in morning.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009
    I'm sitting here waiting to do some genetic testing to prove I have a syndrome that will keep on giving me cancer. 

    This just gets more and more fun. 
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Whoopsie,

    I am so sorry you are going through this.  But you are NOT terminal.  So don't waste so much of wonderful life to be lived by focusing on it.  I know, cancer SUCKS.  But I would trade places with you in a heartbeat.  We (stage iv'ers) are terminal.  You are not.  Go live your life and be thankful you have not been told you will die.

    Hugs and prayers,

    Bethie

  • saint
    saint Member Posts: 1,877
    edited April 2009

    Whoopsie---hugs! Sorry you are in this dilemma-----Personally I'd choose DeNile!!!!!!!!  I turn my back on "WHAT MIGHT BE!" & suggest you focus on living your life & NOT on those genes! Screw them!!!!!

    Bethie--Your comment made me think of Jack Nicholson in the Bucket List--"Somewhere some lucky bastard is having a heart attack.."   LOL I'd trade with most ANYONE!!  

    Be well & stay strong 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Thanks ladies, I know you are both right, but my gosh, every doctor that came to me (it's at U of Chicago) was fascinated.  They all said the same script, "To see one individual with three isolated malignancies is extremely rare, and your age makes it even more rare!"  So, they very much made me feel like even though I'm not a stage IV'er, cancer will be the thing that kills me. 

    As they described the syndrome, there is not one part of my body that is "safe." 

    I just feel like, "How much more can I take?!  How many more surgeries?! Recovery gets harder and harder each time." 

  • saint
    saint Member Posts: 1,877
    edited April 2009

    Yep--all true-----but consider the alternative................!

    I don't think I like your doc's attitudes--send them here so we can set them straight! Next time tell them your survival will also make you "rare" cuz you plan on making them all eat their words!! They ain't God & can't possibly know what's going to happen to you ---EVEN IF YOU HAVE THE GENE!!! it doesn't mean you are guaranteed to get another cancer! 

    And one more thing---what if you DON'T have that gene>>>>????????

    Hugs be well & stay strong 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    Whoopsie.... I looked into my magic crystal ball, and saw a reflection of myself.  Oops that is a snow ball with nothing in it but a mirror.  Took me a few minutes to figure it out.  You put a picture in it and have your very own snow ball.  How cute.  But Whoopsie... did not see you there because you are out enjoying the tulips and daffodils.  You realize that those doctors see you as as miraculous - surviving 3 malignancies at your age.  So if you are miraculous..... you are gonna outlive us all.  And just for the rarity of it, you are going to have a wild time on the giant roller coaster ride of life.  And if you go, it will be with a wild YAHOOO.  While the rest of us sit and simmer in our jealousy of not being YOU.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Saint and Dream,

    I want you both to know that you both brought me to tears.  Not just silly, random tears, but big hot and wet tears. 

    Thank you both.  I WILL be RARE, and I WILL be MIRACULOUS. 

    Your words have meant the world to me.  I thank you sincerely. 

    And, please, don't be jealous of me.  Isn't it odd how each situation strikes us all so differently?  That is why I am thanking you sincerely.  I have felt so sorry for myself after number 3 because the recovery has been hell at best.  Infection after infection, horrific pain and cramping so bad I could not breathe.  Thank you for reminding me that we all have a story. 

    Much love and many prayers, Deb

  • saint
    saint Member Posts: 1,877
    edited April 2009

    Dream----I love how you write!

    HUGS ALL

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    So do I, dream!  

    Love you girls,

    Bethie

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited April 2009

    Ah shucks thank ya

  • CapeBretongirl
    CapeBretongirl Member Posts: 364
    edited April 2009

    Dream, you are poetic.  Whoopsie may you dance around the merry-go-round of life, for a very, very, long time.

    Angel xoxo

  • LynnW
    LynnW Member Posts: 191
    edited May 2009

    Sue, I have not been online in a while. I've missed this disheartening news.  I am thinking of you daily and praying there is some kind of miracle or hope that you can cling to. You have been of help to many women here.  We are more grateful for you than you could be of us.  Hang in there and rest and take one day at a time.

    luv Lynn

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited May 2009

    I hope we hear an update soon and that all is well..... SUE;...... SUE?   Suuuuuuueeeeeee!   Has anyone seen or heard from Sue..  tell her we are all thinking about her

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited May 2009

    SUE:     We are still waiting.................................................!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    I hate to post this.  Sue passed away on May 6th (I think).  Brenda emailed her husband and found out today.  She posted about it on stage iv board.  I am so so sad.  I know we all knew this was coming....but damn it, it is a kick in the gut.  Sue was a sweet soul!  I hated the pain she experienced at the hands of her husband issues.  We could really relate to each other.

    Damn, damn this frick'n disease.

    Hugs to us ALL and prayers to Sue's children. 

    Love you all,

    Bethie (aus)

  • saint
    saint Member Posts: 1,877
    edited May 2009

    I'm so sorry to hear about sue!  From what I knew of her she was brave, honest & good to everyone.

    I am glad she got the chance to post her own words here. It is inspiring as nothing else can be.

    I keep the candle burning........ 

  • ElaineD
    ElaineD Member Posts: 2,265
    edited May 2009

    I shall miss this dear friend so much. I had hoped that she would have lived to see her daughter's birthday, which was one of her goals, but sadly it seems that this was not to be. I hope her kids are doing as well as they can-they must be feeling so vulnerable, afraid and scared. Rest in peace, sweet sister,xx

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited May 2009

    May God bless and keep Sue's family. Heaven has a new angel. Hugs, Mazy

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited May 2009

    Oh boy..... she was so cool.  So supportive.  Well I hope there are tulips and daffodils to dance around in heaven.... I could really see her doing that.   My heart is heavy.

  • EWB
    EWB Member Posts: 2,927
    edited May 2009

    rest sweetly, dear sister, rest sweetly.

  • getwell
    getwell Member Posts: 535
    edited May 2009

    Rest in peace, dearest Sue.

  • saint
    saint Member Posts: 1,877
    edited May 2009

    Just want to spread the word that our dear Dream is OK, but "incarcerated" (asd she likes to say) at Princes Margaret Hospital in Toronto. She had a spell of confusion & unsteadiness so her dh took her in. I don't know how long she will be there, but they have changed her meds & want to be sure she is regulated & understand why she had the problem.

    If you would like to give her a call her number is: 416 946 4501 eextension 2441#

    I will try to post when she learns when she is going home. NO puter in the hospital (at least not yet)

    HUGS--be well & stay strong 

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited May 2009

    Saint,

    Thank you for letting everyone know. Many have wondered about her in chat. I pray she feels better and is home soon. Hugs, Mazy

  • ElaineD
    ElaineD Member Posts: 2,265
    edited May 2009

    Thanks Saint-hope she's liberated soon!

  • EWB
    EWB Member Posts: 2,927
    edited May 2009

    Hope they find out why, hope its just a matter of straightening out meds!

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited May 2009

    My deepest sympathies to Sue's family.  And prayers for their comfort. 

    I just spent the last days with my sister-in-law who this cancer beast has made an Angel last Wednesday.

    Someone had asked about morphine that you can administer at home.  It is oral.  It comes in a syringe without a needle (like the one for giving pediatric medicine) and the liquid morphine is "squirted" under the tounge.  And yes, the paperwork to arrange it is unbelievable.

    There is also the fentanyl (sp?) patch and fentanyl (sp?) "lollypop" that you swish around in your mouth.  All of these provide wonderful pain relief without any IV injections.

    While I don't meant to "butt" into your conversation (I am not Stage IV at this point, although I know all of us Stage I'ers are one scan away from it) I feel that it is important that we all give our health care proxies to someone we can trust to fulfill our wishes. 

    After the day of suffering my sister-in-law went through a few days before becoming an angel (she was in the hospital, hoping to become well enough go home to pass--so they were giving her the meds she would receive at home) I have instructed my husband and daughter that when and if I get to my final days and am in pain, relieve the pain and don't worry about dropping my blood pressure or keeping me awake! 

    Helen's a&&hole doctor did not want to increase her morphine, or give her the fentanyl patch or pop becaue he is a "religious man" and did not want to hasten her death.  She was suffering greatly and it was on my watch (her daughter had taken a break to get a cup of coffee) and I cell phoned her and told her to get over here, fire this jerk, and call in the pain managment team, pronto.  I told the doctor he was toast and her care would be taken over by someone else.

    The pain management team came immediately, and within twenty minutes, she was out of pain. 

    She passed peacefully the next day, after saying her goodbyes, surrounded by family and friends.

    I hope I have not offended anyone or overstepped any bounds, 

  • Marple
    Marple Member Posts: 19,143
    edited May 2009

    Jane, I'm sorry about your sister-in-law.  Gentle hugs.

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