calling all Angels

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dorion
dorion Member Posts: 183
edited March 2014 in Ovarian Cancer #1
Well here I am again, more scared then ever before. Hearing the words "your cancer is very active" has put a massive hole in my heart I can't tell you how aweful I feel. I feel hopeless yet trying real hard to get back my mojo, that kick **** attitude that I've had for two years. Yet I can't stop crying, thinking morbid thougths and just terrible feelings. Anyone else going through this? All I could think of is getting to the board here and talking to you guys. I feel like everything has changed for me, the playing feild has changed. I look at my daughter and try not to cry. I wanted to ask what does very active mean? But I am not prepared for the answers. They are offering me a clinical trail study treatment involving two different drugs. One is to stop the cell from dividing and the other cuts the blood supply off to the tumors hoping to stop them in their tracks. This is a very new study only 7 people on it so far and only a month into it. So there are no conclusive anything to go by yet. I have to go through a bunch of tests first to see if a qualify first though, so it's not in the bag yet.

Has anyone else gone through scary times like this, I just need some encouragement, but yet not asking anyone to lie to me...lol....I'm not really laughing. I want to be back to where I was a month ago, I want my sense of humor back and I need my stregth back, I need to be strong again. I need you guys!!! I'm not gonna cry cos Meghan will see me, she has been so awesome, I know she senses things cos she's been so amazingly affectionate lately, just loving me and giving me so many kisses and hugs, I love this daughter of mine. I look forward to hearing your feedback my lovely Ladies!

Linda

Comments

  • JoanC
    JoanC Member Posts: 231
    #2
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    Calling all angels
    Linda,
    I know you said you were not prepared for the answer to what "very active" means......but it may not be as bad as you are imagining. I find that my imagination most of the time makes things far worst than they really are. All we can do is take one day at a time and try not to think to far ahead. When I start thinking to far into the future I get scared and depressed so I find if I stay focused on NOW and enjoy NOW and only think about this day I can manage my feelings.
    You have a beautiful daughter that loves to the moon and back as you do her.....so try to stay strong for her.....I know how scared you must be but you are a warrior and you can do this. Remember "it aint over till its over" as Yogi used to say. I am not very good at writing or expressing myself but my thoughts are with you. I hope you get your mojo back real soon because I love reading your post....your one on Meghan's Christmas was wonderful.
    Anyone that put together the Christmas you did for Meghan while being so sick can take on this new challenge! You go Teal Warrior!
    Love and ((Hugs)) Joan
  • Mwee
    Mwee Member Posts: 1,338
    #3
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    mojo
    Dear Linda,

    I can totally relate to that kicked in the teeth feeling. Sometimes the worst part of all of this is the constant readjustment we need to go through. Pass those clinical trial tests, girl... we'll be waiting to celebrate with you.

    Give yourself some time to regroup. You have the best mojo making machine in that beautiful daughter of yours.
    ((((HUGS)))) Maria
  • msfanciful
    msfanciful Member Posts: 559
    #4
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    Live For Each Day.
    Hi Linda,

    Ever since diagnosis (stage 4), everyday is a day I live with that nagging fear. For the last 2 years I couldn't function without crying. I would hear a favorite song somewhere or see a beautiful movie or even just see the beautiful scenery in my backyard and then that good ole fear would kick in and I'd think " Oh God look at all of the beauty of life I'll be missing."

    There is not one moment even today those thoughts do not cross my mind.

    One thing that has helped me is being able to continue to work, it's hard but it definitely preoccupies the majority of the day. This way I don't have too many moments of spare time to allow those thoughts to enter my mind.

    Then too, Joan is right about us making the worst (in our mind) of things. Keep in mind too that many doctors just seem to be brutally blunt. My doctor always tells me " I just can't believe you are still here! You are just a joy!" And then I look at her and say..."Now wait a minute, it almost sounds like you want me to kick the bucket!". Then we just laugh about it, because even my doctor didn't realize how she sounded.

    I finished a clinical trial too with the drug Avastin, it also blocked the blood supply to the tumors, I do believe it slowed down my active cancer substantially. Dorion the whole point, I think is if nothing else, how blessed I am to be able to slow this monster down, because it allows that much more possibility to be around for the next new treatment.

    Remember, everyday brings us closer to surviving this cancer longer and longer.

    Live for each day, enjoy your beautiful daughter and try not to focus on those negative terms okay?

    Last, since my diagnosis, I've skydived, got my first tattoo (boy did it hurt)and I'm not even a tattoo person LOL!

    I'm praying for you.

    Love Sharon
  • jtotten1
    jtotten1 Member Posts: 21
    #5
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    Do NOT Lose Hope
    Linda - try to stay strong; we're all with you. We all had that pit-of-our-stomach feeling when we first got diagnosed, so we all know what you're going through. Just stay tough, and never ever EVER give up hope.

    I've never written to you before, but your posts are amazing....inspirational...you're someone that I look up to, and we're all each others' touchstones. YOu give ME hope every day, so try not to lose that yourself!!

    Get back to your kick-****-self, and don't let your imagination run wild. We all have questions we're afraid to ask, but remember that no one has an expiration date bar code on the soles of our feet!!!!!!

    Give yourself a few hours to cry & wallow, and then get right back up on your horse and carry on as normal. Think of this as a speedbump!

    With you in spirit, my warrior sister!!!!!!!!
    xoxo
  • Barbara53
    Barbara53 Member Posts: 652
    #6
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    watch what you ask for
    when it comes to angels, I mean. She's been with me all day, now she's with you, too.
  • MK_4Dani
    MK_4Dani Member Posts: 314
    #7
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    Fighting For Dani
    Dorion - I too have a daughter who is the light of my life and the reason I will fight with whatever drug/treatment they will offer me. My thought is: our daughters now have a risk factor and I will help pave the way to a cure just like Bonnie, Saundra, Kathleen, etc., have been doing for the last several years. Along the path of this fight are scary times and times we are just so emotionally and physically drained and we have to renew our fighting spirit. This board helps renew my spirit! You are inspiration even in your low times 'cause it makes me feel normal to have the scary times. I live by and repeat the following at night when I am feeling scared:
    The will of God will never take you where the grace of God will not protect you.
    A teal warrior gave it to me and has helped; perhaps it will help you.
    You will get your mojo back and you will kick-**** until God's will be done! Is it a sin to use "kick-****" and God in the same sentence?

    BTW: I have a niece named Dorion, is it a family name?
    Life Is Good, Never Give Up,

    MK
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #8
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    moms with young kids
    I always feel its more tragic when young kids are involved. Right or wrong, I don't care, its how I feel. I don't know what words I can say except never give up hope. I too have young kids (6 and 4!). Are you writing letters to your daughter? I started writing to my youngs sons knowing that I may not be around to watch them grow. I realize someday I might be facing these sames challenges you are facing today. That is why this board scares me yet gives me hope. Your daughter will cherish those letters in years to come. I have done some video for my kids and put together memory books as well. Never give up hope.
    Best of luck to you.
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #9
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    nancy591 said:

    moms with young kids
    I always feel its more tragic when young kids are involved. Right or wrong, I don't care, its how I feel. I don't know what words I can say except never give up hope. I too have young kids (6 and 4!). Are you writing letters to your daughter? I started writing to my youngs sons knowing that I may not be around to watch them grow. I realize someday I might be facing these sames challenges you are facing today. That is why this board scares me yet gives me hope. Your daughter will cherish those letters in years to come. I have done some video for my kids and put together memory books as well. Never give up hope.
    Best of luck to you.

    Scary times too
    Hi Linda,

    I have also felt such scary thoughts, and too have been so terrified and anxious that I get nauseous. The waiting for results of a cat scan seem to be the worst for me. It seems that everytime I convince myself to be positve, I get shot down, like this week. I got sent home without chemo because my marker has been going up for several weeks now and the doctor feels that I am probably now resistant to the combination of Gemzar and Cisplatin. It looks like my next chemo will be Alimpta. Has anyone else ever had this drug? I don't recall seeing any recent posts about it. One positive thing to think about is that there is a long list of different chemos to try as Bonnie has reminded me several times over the years. And, hey Bonnie, way to go!!! Even my doctor (negative sometimes) said that there are several drugs in the pipe line, and perhaps even some clinical trials for me, although I wouldn't qualify for most (already been in one, and have been on chemo for several years). How long have you been dealing with this monster, I forget? But as someone else said, NEVER give up hope!!!!! Most doctors agree that positive thinking can really help your prognosis and outcome, so try to get back to that! You can do it! Lots of hugs, MM
  • 1wishmaker
    1wishmaker Member Posts: 3
    #10
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    calling all angels
    I wanted to write and tell you what happened at my last chemo treatment that made me....yeah, I said me feel like the lucky one...

    I had already been hooked up and had shed my tears....this being my first recurrence. When in walked 3 young kids, 1 girl, 2 boys all early twenties....it was obvious the one young man was taking his place in a recliner....after a bit the young girl came over and just started chatting with me and telling me about Bobby.....seems Bobby's cancer has progressed throughout his body....it began with testicular cancer and has now spread and surrounded his heart....Bobby had been living from friend to friend and when she, (the young girl) found out she told her parents about "Bobby" Her mother went and got "Bobby" and has since given him a home...
    The 2 left to go for lunch which left "Bobby" and I alone....he looked over at me and ask me what kind of cancer I had, I told him it was ovarian cancer, stage IIIc...he smiled at me and said, "that's good!" I wasn't prepared for someone to tell me stage IIIc
    was "good"......I said, "I suppose." Then I ask him. "How do you feel about your cancer."
    He smiled so big and said. "I've made my peace, I know I'm going to a better place."
    I posted this, not to make anyone cry, but in hopes that it makes us stop and remember just for a moment all the moments we've been given. For me, I will continue to fight this disease and to be a voice for all the young women diagnosed after me....it just makes no sense to me that with all the technology we have today, we just don't have a screening for ovarian cancer.....
  • dorion
    dorion Member Posts: 183
    #11
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    MichaelaMarie said:

    Scary times too
    Hi Linda,

    I have also felt such scary thoughts, and too have been so terrified and anxious that I get nauseous. The waiting for results of a cat scan seem to be the worst for me. It seems that everytime I convince myself to be positve, I get shot down, like this week. I got sent home without chemo because my marker has been going up for several weeks now and the doctor feels that I am probably now resistant to the combination of Gemzar and Cisplatin. It looks like my next chemo will be Alimpta. Has anyone else ever had this drug? I don't recall seeing any recent posts about it. One positive thing to think about is that there is a long list of different chemos to try as Bonnie has reminded me several times over the years. And, hey Bonnie, way to go!!! Even my doctor (negative sometimes) said that there are several drugs in the pipe line, and perhaps even some clinical trials for me, although I wouldn't qualify for most (already been in one, and have been on chemo for several years). How long have you been dealing with this monster, I forget? But as someone else said, NEVER give up hope!!!!! Most doctors agree that positive thinking can really help your prognosis and outcome, so try to get back to that! You can do it! Lots of hugs, MM

    embarassed
    I sat here for an hour just starring at the computer wanting to grab it and see what you gals have been up to. I decided to find the stregnth to reach for it and open it sign on and viola! Here you all are, rallying around me once again to my embarrassment, while I know we are all going through the same thing I feel it's always me reaching out to you ladies for help in dealing with my anxiety knowing that you too are going through your own, yet you are here with me. Reading each reply I wept over Meghan's laptop trying not to get tears on her keyboard....lol....you all touch my heart to the very core! I can't express my thanks and gratitude to each and every one of you for your heartfelt responses. I haven't writen letters to Meghan although I know it's a good idea it just scares me. Dorion is my maiden name. I think if I ever have these damn pee bags taken away from me I will feel so much better, I hate lugging these things around, it is such a nuesance and degrading. I'm down to 110 lbs from 159 and I feel like I'm slipping away. But after reading all these posts I will get that damn **** kicking mojo back and yes I think that God will forgive us for using His name and **** kicking in the same sentence, he'd probably tell us to do just that anyway. Since Monday I have only found one day that I felt strong enough to get dressed and go out and that yesterday, the rest of the time I'm in bed, I feel so tired all the time, trying to shake it with all my might, and after reading all this I will damn it!!! I will get my mojo back. Change of subject, xmas bunny is doing great, but he's gay, all he did was try to attack my ex husband while he was here for the holidays, we couldn't let him out of his cage cos he'd go right for Andy's foot, knee whatever was exposed this damn rabbit wouldn't leave him alone, so I took a stuffed bunny I had kicking around the house and put it in the cage and well all I can say is that poor stuffed bunny! It will never be the same again. Love all you guys and I'll check in later.

    Linda
  • saundra
    saundra Member Posts: 1,370 Member
    #12
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    dorion said:

    embarassed
    I sat here for an hour just starring at the computer wanting to grab it and see what you gals have been up to. I decided to find the stregnth to reach for it and open it sign on and viola! Here you all are, rallying around me once again to my embarrassment, while I know we are all going through the same thing I feel it's always me reaching out to you ladies for help in dealing with my anxiety knowing that you too are going through your own, yet you are here with me. Reading each reply I wept over Meghan's laptop trying not to get tears on her keyboard....lol....you all touch my heart to the very core! I can't express my thanks and gratitude to each and every one of you for your heartfelt responses. I haven't writen letters to Meghan although I know it's a good idea it just scares me. Dorion is my maiden name. I think if I ever have these damn pee bags taken away from me I will feel so much better, I hate lugging these things around, it is such a nuesance and degrading. I'm down to 110 lbs from 159 and I feel like I'm slipping away. But after reading all these posts I will get that damn **** kicking mojo back and yes I think that God will forgive us for using His name and **** kicking in the same sentence, he'd probably tell us to do just that anyway. Since Monday I have only found one day that I felt strong enough to get dressed and go out and that yesterday, the rest of the time I'm in bed, I feel so tired all the time, trying to shake it with all my might, and after reading all this I will damn it!!! I will get my mojo back. Change of subject, xmas bunny is doing great, but he's gay, all he did was try to attack my ex husband while he was here for the holidays, we couldn't let him out of his cage cos he'd go right for Andy's foot, knee whatever was exposed this damn rabbit wouldn't leave him alone, so I took a stuffed bunny I had kicking around the house and put it in the cage and well all I can say is that poor stuffed bunny! It will never be the same again. Love all you guys and I'll check in later.

    Linda

    Sending extra prayers
    Helpless is how I'm feeling too. I am really good at saying a prayer though, and that is what is coming your way. God is in control, Linda. Go with a fight!!!! Love you, Saundra

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