Update for friends here

Discussion in 'Fibromyalgia Main Forum' started by pam_d, Jun 16, 2008.

  1. pam_d

    pam_d New Member

    I'll make this brief; as it is not specifically regarding FM/CFS, if moderators feel this post needs to disappear, then so be it. I think many of us here have additional illnesses on top of FM or CFS; how we handle those and the effect it has on our FM or CFS CAN be relevant.

    In any case, to update my friends here who have been so supportive: I enter the hospital on June 22 for the intense chemo prior to my bone marrow transplant on June 28. That is considered my "new birthday" in the transplant world as I will have a new immune system from then on. I have a very well-matched, unrelated donor (Bless him! I'm not allowed to know anything about him, except that I know he's a remarkable, selfless individual). Please keep me in your thoughts and prayers; the chemo prior to transplant is designed to be so strong, you will not come back from it without the transplant. Kind of a sobering thought...I will die without this, though, so you just look forward and trust the experts!

    I will probably just post maybe one more time after we see how the transplant has worked, so as to not clog up this board with things not related to FM/CFS.

    Moderators, if you feel you need to remove this post, I will understand.

    Friends and "family" here, thanks for all the great support and encouragement. Many of you not only battle FM/CFS, you also have other concurrent illnesses; I am not the only one who engages in this struggle. I try to do it with as much grace and positivity as I can, but it's still a challenge! And everyone here can relate, I'm sure. I wish all of you the best---and more pain-free, fog-free and fatigue-free days in the future!

  2. MamaDove

    MamaDove New Member

    Hello Pam,

    Thank YOU for taking the time to post what you have been going through and for the news that you are taking another step forward...You are an inspiration to us all...Strength and Courage are just two of the fine qualities you posess...

    I am sending you PEACE,LOVE & LIGHT and know that many walk along with you on this journey...You are not alone...

    We all Love You!!!

  3. gapsych

    gapsych New Member

    You know we will all be rooting for you. Even during your illness you have been here to support others. You are so admirable.

    This post is where it needs to be as you are part of our FM/CFS family. How could that not be relevant? So if you feel up to it after the transplant, let us know how you are doing.

    Healing thoughts to you.


  4. kjfms

    kjfms Member

    I hope you know my best wishes and prayers are with you.

    I am sure you will do fantastic -- you are so strong and brave.

    Post when you feel up to it. I always look forward to hearing from you.

    Take care of you first,

    Karen :)
  5. Dlebbole

    Dlebbole New Member

    Hi Pam, best of luck! You have a struggle ahead; I had "normal" chemo with breast cancer. One happy side effect was a big reduction in fatigue/weakness. I hope the same for you. Diane
  6. hugs4evry1

    hugs4evry1 New Member

    Thank you so much for posting the update. You know our thoughts and prayers will be with you.

    I've always admired your strength and courage and you've shown it here repeatedly.

    Know that we're here for you and will support you in any way we can.



  7. tandy

    tandy New Member

    Thank you for the update~

    I pray the transplant helps you regain your pre-illness days.
    Your in my thoughts for a full recovery,...
    Bless you.

    when will they know if the bone marrow has done its job?

    Hang in there ,and remember we're all here for you and hopeful you'll come thru this :)

    HUGE hugs,
    please let us know. I'll have my eyes open for your update/post~
  8. justlooking

    justlooking New Member

    God Bless you and your donor!

    From my experience on this board I have so much admiration for your strength. Despite what you have gone through over the years, you have still wished us luck and health. That in itself shows your grace and positivity. I believe those traits are part of you and cannot be diminshed during this challenge in your life.

    You have many friends here who care about you and we will all pray for your recovery and continued strength.

    God Bless You!
  9. Rafiki

    Rafiki New Member

    I have been thinking about you so much lately. I was beginning to worry but now I won't. I heard the young woman who made the film CRAZY SEXY CANCER (which she has) say that "worry is praying for what you don't want."

    I will think wonderful thoughts about your complete recovery from treatment and your good health following. I will also touch some wood just to cover all the bases.

    I very much look forward to your return and the stories you will tell us which will, no doubt, teach us all some important lessons about life.

    Thanks so much for thinking of us. We'll be waiting right here.

    Don't forget to breathe as easy as you can.

    Thanks again and HUGS right back!
  10. Janalynn

    Janalynn New Member

    You are in my thoughts and prayers and will continue to be.
    Thank you, though unintentional and nothing you'd ever wish for, you have helped put things in perspective.
    YES, Bless you and your wonderful donor!
    Please keep this post here!

  11. jmq

    jmq New Member

    Oh Pam....

    I am so glad you posted. It is just like you to think of others at a time like this! I too, have been thinking alot about you and praying for the right transplant match for you. I will now add the donor to my prayer list since he is obviously a wonderful human being.

    As for you, my friend, I am and will continue to send out positive and healing thoughts into the universe for you. On the day of your surgery, I will light a candle and pray as deeply to the one Source that is in charge of all this.

    You have been there for me in so many ways over the few years I have been on this site...I thank you and say hurry back to your family here.


  12. hi pam_d,

    id just like to say,that im wishing you well for the future,im sure all will go well with your operation.you are in good hands my friend.

    god bless your donor,for giving you this fresh chance in life,of better health.

    im keeping you in my thoughts my friend,and saying prayers for you.

    i realise that you wont be able to reply to us for quite some time,while you are recovering from the operation.

    but please know that,,although you cant see what we type,you are most definately being thought of,we care about you.

    so you mustnt allow yourself to feel that,,,no one cares.

    so...best wishes are sent your way pam_d,and hurry back home to us.

    lots of love from fran in the uk
  13. Rafiki

    Rafiki New Member

  14. pam_d

    pam_d New Member

    What a great group of supporters I have here! No wonder I still check in here from time to time---you guys are a class act.

    I got news yesterday that my transplant might be delayed a week or two---this is only if my donor can change his schedule to accommodate this, which might not be possible. This is because I'm taking a tad longer to recover from my most recent round of chemo (not an uncommon thing), and my doctor wanted me to be in the best condition going into transplant as possible. If we can't delay it, we will just go ahead as planned. I should find out tomorrow. Obviously, I want to do what's best, but I had just gotten my head wrapped around these dates, was as mentally prepared as I could be---and now I may have to wait. Gotta be flexible, I guess!

    Anyway, I will keep you updated...if I can't post when the 5 days of chemo starts (they will be giving me Ativan 24/7 because one of the chemo drugs causes seizures and the Ativan helps guard against that---but will probably make me sleep!) I'll either check in when I'm done, or have my husband keep you posted.

    The transplant actually is a little anti-climactic...about a 3-hour transfusion, not unlike the blood transfusions I've grown used to since getting leukemia. But the hospital brings you a little cake to celebrate your new "birthday"! Kinda cute. The real "fun" starts in the days following when they see if you are engrafting (the new marrow replacing your own) and how you are reacting to getting someone else's immune system.

    Thanks again for the kind words, thoughts and prayers. You guys are the best! And I hope you are all feeling and doing as well as you can.

  15. Rafiki

    Rafiki New Member

    You have, as my mother used to say, the patience of a saint! I can well imagine that once one is ready to go with this it's not easy to adjust to a change. I would be asking them to start the ativan now!

    One of my grown (step)kids has decided to put herself on a marrow donors registry as a result of hearing your story. She's very serious about it and I'm very proud of her. Thanks for bringing out something great in her :~)

    Keeping my eyes crossed!
    and arms open
  16. pam_d

    pam_d New Member

    ..that warms my heart! Please give her my sincere thanks for making this wonderful decision. I hope she has a happiness in her heart, and a little smile on her face from now on, knowing that she has the potential to keep someone's mother, son, grandpa, aunt or dear friend alive. She'll not only be saving a life, she'll be touching the lives of a whole family and circle of friends. What a gift---I'm still in awe that my donor is willing to do this to keep me alive, someone he doesn't even know.

    These are the true heroes...Rafiki, please give your step-daughter a hug from me, and convey my gratitude, the next time you see her! It made my evening to hear this.

  17. poets

    poets Member

    I will keep you in my prayers. You are so brave! I pray you'll bounce back and feel lots better.

  18. Rafiki

    Rafiki New Member

    My stepdaughter had thought about doing this in the past but hearing about your journey was just the link she needed to have a complete chain of inspiration. We seldom know what kind of ripples exist because of something we have done or said. She wants to know how you are and I have been given strict instructions to keep her up to date. I'm happy to do it.

    Eyes crossed!

  19. 1sweetie

    1sweetie New Member

    I, like many others, have been thinking about you and your battle that you are so bravely facing. Thanks for taking your precious time and energy to let us know the present status of your health.

    We, that have had cancer, belong to a special club I think. Especially ones that have cancer and ME/CFS & FM share a special bond that few people can identify with. We get a special strength....you definitely have.

    I will be sending up prayers for you. Here's a early Happy Birthday wish to a new and healthy Pam. I look forward to future posts from you telling us about your successful treatments.

    Soft Hugs to you.

  20. ellikers

    ellikers New Member

    Hi Pam, I haven't been around these broad much for awhile but I just wanted to send you additional support and encouragement ... adding to the wonderful outpouring that this board has already shown you, because you are so phenomenal. ;)

    My Aunt when through treatment for leukemia about 9 or so years ago (wow), so I understand from my perspective on that process what a challenging and strange road it is ... hooray for your new immune system! HAPPY BIRTHDAY!

    To add some hope and positive vibes to your mind when you are thinking about the possible outcomes, my aunt is in COMPLETE remission and has been for YEARS! She danced at her daughter's wedding two years ago ... with a daughter of a friend who was just being born when she was in treatment and my aunt was beaming with joy and starting crying talking about it later, at the sheer joy that here she was, alive, healthy, dancing with a girl as old as her new body and recovery! Isn't that amazing?! My mom and aunts were all crying too.

    I wish you all the best on your road to health, recovery and kicking the butt of all your struggles and health challenges. :)