The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 675. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    jamielynn Registered Users
    Currently Being Moderated

    I don't know how to be alone. When Maria died I vowed I would spend my life alone and maybe even be a single parent by choice and it's only been a month..almost two...and I am struggling. It's messing me because I don't WANT to be with anyone else but her ever! But being alone is overwhelmingly hard for me and I can't understand these emotions. I am struggling to understand what the meaning of life is, what the point of all of this is. A week after Maria died I wrote on my Facebook that I needed a drink. Some friends started to chime in and we were all joking around and I said I think I will spend the next year as a drunk college kid. Well my mom and grandma saw this apparently and decided to write me an email telling me I was an embarrassment, a disappointment, and a free loader. Yeah. So I also lost my entire family. There is no forgiveness this time. They were never there for me and they weren't there when I needed them in the end. The few "friends" I had are not around. No one knows what to say apparently. And my "brother-in-law" decided he wanted to shove his hand down my shirt the other weekend! Yeah...my life since Maria died has been freaking amazing! Oh and then I got a call at work from some idiot saying he's been watching and following me, that I better get him off or he was going to kidnap, rape, and kill me.

     

    Yeah....

     

    Soooooo....I didn't feel life was worth living before. I NEVER felt safe in my life until Maria. And now I feel naked to the world, and like there is no point to life at all. It's great. And yes I am seeing a councler. Not helping much.

  • 676. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    pamsouth Registered Users
    Currently Being Moderated

    Hi Jamielynn

     

    I was diagnosed with CML in 2005.  I am 64 years old.  Last fall the onc had wanted me to change drugs and got very upset and changed onc and found this board.  Anyhow I won’t go into all that it is a long story.

     

    For some reason I have become somewhat of a night owl.  I need to get back on track soon, as it is summer when I should be enjoying the outdoors.

     

    A healthy adorable boy Emilio.

     

    I am glad to hear you got the night shift job since you are used to being up at night.  Your own space and privacy is good for you.  Be good to yourself and quit beating yourself up. Easier said then done, because sometimes we  humans have a recording in our brains, that are on repeat. I do that myself, but I work at shifting my thoughts to think on more positive things.  Still have a set back now and that. 

     

    Anyhow I just wanted to stop by and say Hi, that I think of you often and pray for God’s healing.  One day you feel the sunshine and you will smile when you think of Marie and the bad thoughts will start to leave you.  You need time, and stay around positive people that make your life a little brighter.

     

    Take care, PamSouth

  • 677. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    pamsouth Registered Users
    Currently Being Moderated

    Jamie, Jamie, Jamie, 

     

    You certainly have to much on your plate, a full load, a lot of losses at one time.  Enough to grab your heart and say Dear Jesus help me, I don’t know how to fix anything.

     

    I am telling you one day the light will come on, and the sun will shine on you and you will smile again. I can’t relate to all you have went thru, not in your exact situation.  But when I was diagnosed I lost some family too, it is a loss to me to this day.  If I think about it to long, it can crush me, Then my mind just digs a big hole a bottomless pit and everything looks bleak. But I am finding new ways to cope and others who except me.  I think there are many of us who have family situations, you know, we sometimes laugh about it on FB , like the crazy family.  Sorry not funny right now.

     

    Hey Maria , wait I am going to go find a card to cheer you up.  Be right back.

     

    One Day At A Time.

    http://www.bluemountain.com/ecards/encourage-and-support/card-3334044

     

    Marie I love this song, I hope you draw strength from it.

     

    http://www.youtube.com/watch?v=QOYLM95xGY8

     

    The words are on the screen, but just in case there is a glitch and you can not connect. I wrote some of the words out for you. Peace!

    “"One day at a time Sweet Jesus, thats is all I am asking from YOU. Give me the strength to do everyday what I have to do. Yesterday is gone sweet Jesus and tomorrow may never be mine. LORD help me today and show me the way one day at a time. I am only human. I’m just a women. Help me to believe, in what I could be and all that I am. Show me the stairway that I have to climb. LORD for my sake teach me take one day at a time. One day at a time Sweet Jesus, that is ALL that I am asking from YOU!! YESTERDAY IS GONE SWEET JESUS AND TOMORROW MAY NEVER BE MINE. LORD HELP ME TODAY, SHOW ME THE WAY, ONE DAY AT A TIME!! OH, do you remember, when you walked among men. Well Jesus you know if your looking below, that its worst now than then. There is pushing and shoving and It’s crowding my minding. So LORD FOR MY SAKE TEACH ME TO TAKE ONE DAY AT A TIME!! LORD HELP ME TODAY, ONE DAY AT A TIME! AMEN!!”"

     

     

    PamSouth

  • 678. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    warrior Registered Users
    Currently Being Moderated

    Jamie

    I am glad you checked back in on the board....We all have been concerned about you. Congratulations on being an aunt to a new baby boy! I hope you can find a way to embrace your new nephew and a new life! I know you are struggling right now but I suggest that you take the energy and determination you poured into Maria and give it back to yourself right now. You really need to take care of yourself... and find a safe place so you can grieve and imagine some new dreams... where would you like to relocate? where do you have friends? Your recovery will take time so be  patient with your self....

  • 679. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    felursus Registered Users
    Currently Being Moderated

    Jaimelynn,first of all I'm so happy that you wrote in: we've been worried about you. 

     

    Of course you need to grieve, but to wallow in guilt over something you didn't cause is not healthy.   Diid YOU give Maria leukemia? Of course not.  Would she still be alive if she hadn't done the transplant?  Maybe - but then the question is: would she be suffering?  And the answer to that is "probably yes".  Would she have died or be in the process of dying anyway? yes..  So the person you are grieving for is not Maria: I know you wouldn't want her to suffer.  You are grieving for yourself.  You were the absolutely best caregiver anyone could ever imagine. (Trust me: I've been married for many years, and I know that my husband won't come and sit in my room all day, run errands and argue with the MDs as you did.)   You shouldn't be second-guessing yourself over things you might have done differently: what you did do you did out of love.  If you keep beating yourself up, you are negating not only your love but Maria's love for you as well. 

     

    What you need to do is get some professional help.  Contact the LLS in TX and see if they can connect you with someone.  Alternatively, ask Maria's family's MD to connect you with someone.  You need help to get yourself into a place where you can remember your life with Maria with happiness and not with feelings of guilt because it ended.  You probably also need to sleep - a lot.  Exhausiton does horrible things to our mind and body: it puts everything out of balance and exaccerbates depression.  I know that Maria wouldn't want you to be going through what you are going through.  I'm sure she'd rather be remembered with joy - and that because she loved you, too, she'd want you to have a fulfilling life.

     

    I wish there were some way I could be of real help, but please know that I am thinking of you.

     

    Big hugs,

    Karen

  • 680. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    felursus Registered Users
    Currently Being Moderated

    I hadn't seen your second post when I wrote in before.  When you say "brother-in-law" - is that someone from Maria's family or your own?  If it's the former, then you need to get out.  Also, do you have any idea who made that threatening phone call?  That's serious and needs to be reported.  No one has the right to threaten you.  Did you report this to your counselor at least?  If that person isn't the right one for you, then you need to find someone else.  If you feel insecure (physically) where you are, then you need to go somewhere else.

     

    You know as well as I do that going out and getting blotto (that may be a British-ism) on alcohol isn't going to solve your problems.  You seem to be a very resourceful person: you dealt amazingly with all the issues around Maria by yourself.  Well, think of the things you need to do now as also being for Maria: she lives through you.  Before you were talking about studying nursing.  Why not take it up?  It will give your life some focus: and trust me you won't have the time to concentrate on anything else, and your life will have some direction.  Just a thought....

     

    Many hugs,

    Karen

  • 681. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    KyGuy Registered Users
    Currently Being Moderated

    Jamielynn,

    I'm glad to hear from you.  There's no right or wrong way to grieve and no one should tell you that you need to act a certain way.  I'm sorry that your family has not been supportive.

     

    I'm concerned about the brother-in-law and the phone call.  I'd report the phone call.

     

    Be patient with yourself.  You'll move at the pace that's right for you.  l'm glad that you're seeing a counselor but don't be hard on yourself if things move slowly.  It's good that you're connecting with friends on facebook. 

     

    Take care,

    Kelly

  • 682. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    Tex Registered Users
    Currently Being Moderated

    jamielynn wrote:

     

    I am struggling to understand what the meaning of life is, what the point of all of this is

     

    If you ever figure it out, write a book and sell it.  And none of this mystery crap, speak plain English and help people understand things for a change.

     

    I try to live with an attitude of F 'em if they can't take a joke.  As for your mom and grandmother, I'd say that truly applies and I'd consider contacting the police about your "brother-in-law's" actions.  That's sexual assault and should be frowned upon, even in Texas.  I know that could cause more family ripples but at this point, does it really even matter?  You are your number one source of preservation.

     

    Not all counselors are worth a damn...I think probably as much as 90% of them have no business dealing with people's brains and emotions.  Of the few who are worth a damn, not a one of them is good for everyone they might meet.  If this isn't working, go talk to someone else who seems to understand where you are and what you're looking for out of the counseling.  Don't waste your money, time and patience on someone who's not helping and you don't think will be able to.

     

    It sucks.  It's one of the things we risk when we allow ourselves to love.  But it's a risk worth taking for all of the joy love can bring.

     

    Blessings

  • 683. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    bobsmama Registered Users
    Currently Being Moderated

    Jamielynn, my heart absolutely goes out to you. I wish I had some wise words to say that could help you make the next move in a positive direction. As you've described above, you are so so vulnerable. And people know it. Its their own fear of not knowing what to do to help you because they perhaps never known anything of this magnitude itself. This shit is something out of ordinary... people thrashing about trying to make sense of it all the while being who they are in real life. Because that's all they know. That has nothing to do with YOU. You are who you were when you met Maria. You both loved and cared for each other till the end. As life would have it, and none of us knows why some of us live and some of don't. Its not normal to be taken at the prime of our lives... its just not natural. I rolled in my bed the other night cursing the heavens... Here I am today, standing... of course with a margarita in hand. Hell if that's what it takes to numb my feelings for just one day... then I'm going to do it. My thoughts and prayers are with you always....

  • 684. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    matthew8348 Registered Users
    Currently Being Moderated

    I'm so sorry Jamie for your loss! That is horrible about your mother and grandmother! How dare they say such things to you when the person you loved so much died and had to go through such difficulty with leukemia treatment. My mother has leukemia and if she were to pass away from this horrible cancer and if a family member said something like that while I was grieving I would..... well I don't know what I would do but I would know they are the worst people ever!

     

     

    Jamie hope you are able to continue moving forward one small step at a time. Just know that there are people here who understand what you have and are going through.

  • 685. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    mlpastorello Registered Users
    Currently Being Moderated

    My heart is breaking for you because I literally am going through the same exact thing except it was my identical twin sister. She was my breath, life, heart, and my being. I ache every second of the day and it feels as though somebody is suffocating me as I walk around. I lurk here now trying to support my LLS friends and keep up with the people who saved me. I will not lie to you because every day still I want to die..........losing my life to AML and we will never be able to explain how or why? On top of it, people ask me about my leukemia bracelets all the time and I tell them why I wear them and they say things like "so do you have it yet? I mean you could get the same leukemia any day now". And I just walk away because you cannot respond to idiots - waste of time. I will admit I am very lucky because I have her 5 year old and my 5 year old and they keep me breathing. But do you want to know what else keeps me moving? Diana would be so f****** pissed that I would take my life when she fought so hard for hers. She would be so pissed if I left our girls..............but every time I say life is not worth living without her, I talk myself into sticking around and I try to get on with the day because she would be very angry with me if I left this world. You have to think the same thing...........Maria would want you to live the life she wanted. She loved you with all of her heart the same way you did for her. I know it is hard to give advice when you do not know me at all but I followed Maria's story and thought about her all the time and pulled for her. It will take alot of time. It will take years and years..........keep going to counseling and try to surround yourself with people who will comfort you and not judge you. I know they are family and you cannot change them but you can work on yourself now.....for Maria. 

  • 686. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    mamawarrior Registered Users
    Currently Being Moderated

    There is never gonna be an aswer to all of this jamie. Maybe the only peace will be that maria is no longer suffering. I hope that each day that goes by, you can breathe a bit more. (((Hugs)))

  • 687. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    felursus Registered Users
    Currently Being Moderated

    Jaimelynn, I truly hope you see this.  I have been thinking of you all these months and praying that you have found some peace in your life and maybe some happiness.  I hate it when people disappear from the Board - especially after so long - although of course I understand that you'd like to be as far away from us as possible.  Nevertheless, we are worrying about you and wondering how you are doing.  Please do drop us a line.

     

    Big hugs,

    Karen

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