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

    Jaimie, you are speaking and thinking like that out of grief. You are NOT to blame for Maria's death.  Blame the disease.  Of COURSE you wanted her to be cured.  You are not an MD and could only go with the information and advice the medical staff could give you.  Think about how you would feel had the situation been slightly different: that you had discouraged Maria from doing a transplant and she had relapsed and they couldn't get her into remission again.  There IS always that possibility.  You'll never know.  No one does or could.  The only way you wouldn't feel guilty in either situation is if you had presented her with the facts, potential risks (you say they didn't tell you all the risks - so how were you supposed to know?) and then say: "I'm not giving an opinion: you decide, and I'll support you either way."  You wanted her to have what you thought given all the information you had to had was the best possible outcome.  You are not an MD or medically trained: you were and are not supposed to know everything.  Obviously, you have had an education - the hard way.  How were you supposed to know all the questions to ask?  I have a fancy degree from Columbia University and 25 years experience working in hospitals and with various diagnoses, and I don't know all the right questions.  Had I been smarter last summer and hadn't given in to what I was told, I would have done the darn drug study then or would have pushed for more chemo then.  Yes, I've had a nice "vacation", but now it's over, and I've made things harder for myself. Maybe, the result is that I've (figuratively) committed suicide, because i've made it harder to fight this disease.  I don't know.  I made the choices I made in view of the information I had at the time.  That's what you did for Maria.  You are not supposed to be psychic or prescient.  You made the choices you made out of love and out of a desire for her to be cured.

     

    I do know about wallowing in guilt - in a remote way I've been there.  I had a friend who committed suicide.  She did it because she had a history of trying (and nearly succeeding) several times before.  It had to do with her relationship with her mother - who had died nearly 2 years prior (interestingly, given this Board, of multiple myeloma).  So why did I feel guilty?  I had been staying with friends in another city, and my friend knew this because she called my home (then in London) about 4 days before the event.  I actually returned home the next day but didn't call her.  She did the deed on what in England is called "Mothering Sunday".  She did call someone else on the day - not to say she was depressed/upset or anything, and the person wouldn't have recognized the depression, but I would have.  She didn't call me, because she didn't know I had returned home.  So yes, I gelt guilty, because had I made the effort to contact her she would have called ME on that day, and I might have been able to prevent the suicide (I had done so once before).  I was very depressed about it for several years, and I certainly wasn't anywhere near as intimately involved as you are with Maria.

     

    Maria would never want you to wallow in your grief as you are doing.  It sounds like you are just doing the one thing you promised her and are then planning to consign yourself to doing nothing except to wallow in your guilt feelings and grief.  This is not healthy.  You need HELP.  You need to not reject the love and care that Maria's family are offering you.  PLEASE go and get some professional help.  There are grief counselors.  Don't throw away your life.  Use it for something good.  I hope Tex writes in with some of his wonderful words of wisdom.  He's much better at it than I am.  We all care about you here and want to support you in any way we can. 

    Many hugs,

    Karen

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

    Jamielynn,

     

    The “WHAT IF’S" are awful, especially after the passing of a loved one, that we were the care taker off, we were responsible for their outcome.

     

    Dealing with political bureaucracy of the medical system.  The rules of what; Ins/Medicare/Medicaid, or whoever is taking care of the bills, will allow.  There are so many rules and It is so complex! 

     

    We are only human, we don't have a crystal ball.  We could have made different decisions and what would have been the outcome, we don't know?  Do we get tired, were there things missed? No one can stay up on top of all that, 100% of the time, you would have to be GOD or have super powers.  You can’t always outguess all the protocol and the event of things. Even the medical profession can’t do that!!

     

    When you get on the airplane they say put on your own oxygen mask first, because, if you don't, you are no good to yourself or anyone. 

     

    I paid a high price, taking care of my mother and others, with my physical and mental health, and I am a bit worn down with my owe limitations, as well.  Did I extent my mother's pending death, YES, did I make her more comfortable and ease her pain by sitting with her countless hours and waiting on her endlessly, YES. But I did so, at the risk of my own well being. Did I make mistake, yep. A couple of months before her death, there were a series of mistakes, could I have changed or stopped them, maybe, and if I did, would she still have lived any longer; a day, a week, a month and what would been her quality of life? I am not God.  Strange she has been gone 9 years and still find myself, still trying to  forgive myself, for the what if’s.  After all I can still hear the voice of family saying why did you do that, why did you move her there, why, why, why..... 

     

    Could I have been nicer and more loving to mom, instead of nagging her; mom, I know you don't feel like eating but if we could just get this broth down you, if we could just get you to sit in the cardiac chair, if I could help the nurse to turn you and clean these bedsores more often, they wouldn’t have gotten so deep, the list endless.  But I wanted her to live; another year, another month, another week, another day, another hour. I didn’t want my beloved precious mother, who loved me unconditional, like no one else on this earth, to die!!  I thought it was in my power to make and control the outcome of the medical staff, medicare, depending on others, to do what they are suppose to, the list is endless.  Everything rested on my shoulders, a layman, no professional medical training. How could anyone know the big picture, the body is so complex, who could know all the triggers?  Yes with the help of God mom could live to be 100, if only she would listen, if only the medical staff would do their job, if only their weren't these rules, if only I had been there,  if ONLY>>>

     

    I thought I would give you a few of the details in that many of us have been there to some degree, it is Tuff, it is Hard, it is heart breaking, to put everything into saving a person, that we love as much as the air we breath, and all the what if’s.

     

    We (my husband & I) were the care takers of my mom, from the time she was 81 years old until she passed away just a week before her 84th birthday.  Where were my siblings to help besides all there bickering and criticism, that I should have or shouldn’t have done what?  I Still sometimes hear there voices, replay the event in my head. In and out of the hospitals, up and downs, on hospice off hospice, balancing meds. Keeping all doctors and nursing and changing shift up to speed. Why did I listen to that person, I knew better!!

     

    Mind you she was in her 80’s and I am trying to keep her alive, trying to beat the odds of death lurking all around, a fine tune, walking a tight rope. 

     

    Now yours being different by a horrid disease and much younger and complicated balance of science and art!

     

    I am so....... sorry for your loss.  It makes me think of my own losses. But now I can look back (i am 64 years) and say thank you God for all the right things I did, for all the strength you gave me, for all the angels you sent me, for the majority of the medical staff that did so many things right, (not all), for all the support I had, but I had forgotten about, because my mom’s death and the pain of losing her, overshadowed everything. 

     

    Now I think of mom with fond memories, treasured in my heart forever.  The beating myself up, well I much kinder to myself now, as time is short for me too. 

     

    To live with to many regrets, my mom would not want, and neither would Marie have wanted that (regrets) for you!!

     

    Sending warm thoughts and hugs your way, xoxo, PamSouth

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

    No.  Organ failure killed her.  Disease killed her.  Weakness from being beaten up by disease killed her.  Just plain bad luck killed her.

     

    You didn't.

     

    You are not God.  You are not a well-trained doctor.  You are just a woman who did what she thought was best for her beloved and, for all we know, it was.  She might have died far earlier from ALL.  Who knows?  Every choice we make means we'll never know how the choices we didn't make might have turned out.  And that's the message, you will never know how things would have turned out if she had chosen a different course. 

     

    I slightly disagree with Warrior.  From where I sit, medicine is much more art than science.  The science is the medium, the art is what the doctors are able to do with it.  Ultimately, the doctors agreed to do the transplant.  That means something was there they thought would work, they would not have done it simply succumbing to your will.  They saw hope and promise for Maria.

     

    You are a woman who tends to take the weight of the world on her shoulders, at least the weight of her corner of it.  If you let it happen, the day will come when you realize that the overwhelming majority of what happens in our lives is completely out of our control.  When you realize that, life becomes much less complex and we understand that sometimes the things that look great on paper and are full of hope just don't work out that way.

     

    You need time.  I hope you allow that to happen.

     

    Blessings

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

    Jamie,

     

    We all want something to blame.  The disease isn't anything physical so we come up with something/someone physical to blame.  When I relapsed I blamed myself.  I knew it wasn't logical but something caused me to relapse and it only made sense that it was my fault.  You are not to blame.  The disease did this to her.  The what-if game will drive you nuts and there's no end or solution to the game so stop now.

     

    Honor Maria by thinking how she'd want you to continue.  Would she be happy with you for blaming yourself?  The two of you went down this path based on the information you had to you.  Everyone knows that transplants are a risk.  I faced mine knowing that I had a 40% chance of making it through the first 100 days.  I made the choice to continue not for myself but for my family.  Maria chose the same path because it gave her the best long term solution.

     

    Everyone has different body chemistry and reacts differently to the transplant.  Maria fought with everything she had and you supported her the way she needed to be supported.  If you hadn't pushed her she might not have been around as long and then you'd punish yourself for not pushing her.  Reviewing the decisions will torture you so don't go there.  SEEK HELP.  You need to have someone to help you work through these issues.  Please get help and let us know how you're doing.

     

    Take care,

    Kelly

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

    not doing any better. im sooo angry and want to die. i hate that i promised her anything. life is not worth living without her. Her sister had her baby. She had a scheduled c section. it took them a long time, she had a lot of scar tissue, had her tubes cut and tied, and they had to peel her bladder from her uterus. yeah. you know what they gave her that worked best for her pain and inflammation too???? IBPROFEN!  WHY don't ospitals try that instead of steroids and all the other crap? Of course Maria died. You gave her steroids? How was she supposed to NOT GET EFFING WEAKER!? LEUKEMIA didn't kill her! She was in remission!!!!! Im not coming back here. I will NEVER be ok!

  • 665. Re: Maria's Journey: A Double Cord Stem Cell Transplant
    babygap5 Registered Users
    Currently Being Moderated

    I feel your pain Jamie.

     

    I wish there was something more we could all say that would help you through this, but there isn't.  I am sitting here typing away, reading, and erasing all my words as I don't know what to say to you.  As a caregiver and wife, I understand exactly what you went through with Maria.  I understand all of your emotions.  I understand all of your anger and feeling of hopelessness. 

     

    I will pray for you Jamie.  Please continue to check in, if you want, to let us know how you are doing.  We are all here for you, please do not forget that.

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

    Ibuprofen wouldn't have done a thing to help her.  Indeed, anti-inflammatories tend to damage one or more organ that needs to be protected during recovery..  A C-section is routine surgery, a transplant never will be.  Steroids have helped most of us who survived the transplant to fight the GVH that was trying to kill us. 

     

    We'll be here if you ever change your mind and want to look in or let us know how you're doing.  I wish you healing.

     

    Blessings

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

    Hi Jamie,

    I'm so sorry that you are suffering so much. It is hard to get away from the what ifs.

    It's a catch 22 with a lot that they have to do after transplant, and with leukemia in general. Maria needed the steroids to control her GVHD.

    I don't know what to say because nothing will ever actually help. Just know that I am thinking of you, and that I hope you are able to find the peace and happiness and love for life that Maria would want for you.

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

    We all care about you!       Sounds like Maria's sister could use your help...Also, as hard as it will be you need to be the aunt Maria wanted to be to that little one!  What is her name..Praying...

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

    Jaime - I really don't know what to say.  We all love and care for you here.  I completely understand that your initial reaction is guilt, anger, bitterness, but if you stay like this, you will be giving the disease even more to triumph over.  Steroids are a 2-edged sword: they are very, very necessary.  Nothing to do with leukemia, but steroids have saved my life when I had a terrible asthma attack.  They saved my husband from MS.  They have saved the lives of many people on this Board.

     

    Maria's sister needs you now - as does the baby.  Maria wouldn't want you to be this angry, but she WOULD want you to take her place in the aunt department.

     

    Please write in and send photos of the baby.

    Many hugs,

    Karen

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

    Hi Jamielynn,

     

    I love babies, I am 64 years old and my babies are grown and busy with their lives.  My grandchildren are pretty much in college and out of nest and don’t have much time for grand ma.  I would really love to see pictures of Maria's, new baby niece.  I call her God’s little miracle.  What is her name and how much did she weight?  Have you gotten to hold her yet? Oh I don’t even know if the baby is a girl or boy?

     

    Thinking of You,  PamSouth, hugs

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

    Jamielynn, just want you to know you cross my mind so much. I know there are no words, but my heart aches for you, maria is gone and i know a huge part of you is too. I wish you didnt have to go through this and i hope that one day, somehow, you can breathe again. (((Hugs)))

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

    Jamielynn: I, too, have been thinking of you and praying that you are finding yourself in a more peaceful place.  Please write in and let us know how you are doing.  Perhaps you could post some pictures of the baby.

    Many hugs,

    Karen

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

    Thinking of you as well, Jamie, as I often do. I hope you are as well as you can be under the circumstances.

     

    - WBF

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

    I wish I could say I am doing better but I am not. Depression has set in pretty hardcore. I started working May 2nd and I work graveyard at a hotel. It's perfect since I am used to not sleeping at night but I am exhausted. I never got to recover. I never got to grieve because of staying with her family and I am working hard to get out. Not because I don't love them but because I need the space and privacy now. I haven't let myself feel much lately because the little that I do is too much and it makes me want to end it all but I don't deserve to get off that easy so I stay. All I do is work and sleep for right now and when I am of work I am being self destructive if I am honest. I know I need to change but I am so lost and so out of give a damn's to do much about it. Thanks for caring. The baby is a boy. Emilio. He was 6lbs 15 oz and now he looks like he's 3 months old. He adorable and here and there I let myself be happy with him but most of the time I am so depressed that Im not around any of them.

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