Losing heart in this fight

HopeNSurvival
HopeNSurvival Member Posts: 1
edited March 2014 in Leukemia #1
A year ago I was diagnosed with AML. At the age of 20 I was in remission and a year later it re-occured. Now at the age of 21 I am up for a autologous transplant due to the fact that I am unable to find a donor match. In a few weeks they plan to begin the withdrawal of my stem cells and in a month begin the transplant. I go for a bone marrow biopsy in a week to make sure I am lying in remission safe enough for the transplant. I am a tad scared, but most of all I am lost. I had to withdraw from school and was riding with a 4.0 GPA. I will go back, but due to every mishap taking place I do not know if I should continue to persue what I long for. I had to quit work and I am not one to remain in the house. I have been home for 2 months now and have about a year ahead of me. I feel terribly alone. I do not have many friends, one or two; but they have their own lives. I know in this world so much mishap has taken place and I should be lucky to be alive, but I have been completely torn away from reality with less glimmers of hope appearing. Please if you could just drop a sentence or two, I would love it. Maybe a little of someone else's experience would heal the heart.

Comments

  • MiraT
    MiraT Member Posts: 15
    #2
    I feel an immediate affinity with you because there are some similarities in our stories. I was dxed with AML almost a year ago, just a week before I turned 20. I had consolidation and am still in remission, knock on wood. This kind of thing turns your life completely upside down. Every plan, every dream is thrown into limbo. It's difficult to continue to relate to peers because everything for you has changed. Basically, I completely understand what you're going through, although currently a stem cell transplant isn't on my plate. The transplant isn't going to be easy, and it's going to take some time out of your life, but after that you have such a bright future ahead of you. There is nothing you can't do after beating cancer, and you have so much strength, determination, and character to bring to everything you do. It's difficult to go through this as a young adult because there aren't that many of us out there and we are so different from our peers, it can be difficult to relate to people and then the appearance issue and dating, etc. You might want to look into finding a local networking or support group for young adults. And you always, always can email me. You've got a friend right here. Good luck with everything. I hope this helped a little bit.

    ~ Mira
  • Superstar
    Superstar Member Posts: 8
    #3
    I was diagnosed with APL Christmas last year and am in remission. I know we don't have the same health issues but after reading your "story" I felt that I should send some encouragement your way. Please don't give up hope, you CAN do it!! I relate to what your saying on your friends lives going on while your life has been thrown around and shaken to it's core. It's not that they don't care, but cancer if you've never experienced it before, is scary to them too and I think sometimes they just sortof disappear as a defense mechanism. But they DO care - I've had a few of my friends say they just didn't know how to handle my illness so they stayed away. Cancer is an ugly, nasty, lonely, disease - - but it can also make you a better, stronger, more knowledgable person if you choose to stay positive. Trust me, I know it's gets tiring, and I've had days where I'd all but given up, but I didn't because I had my husband, daughter and family to think about and I wanted to live!! There was a verse that helped me through the very rough days and I want to share it with you...it's Psalms 91:14 - 16. Please look it up and put your name in there. God is listening and he cares so please don't give up hope! We're a rare breed and we're a strong one - we're fighters so hang in there!! If you'd like to email me at kvelderman@yahoo.com I'd love to talk. Don't give up on your dreams, don't let cancer win! Continue to pursue everything you ever wanted as soon as your well!
  • kathy1957
    kathy1957 Member Posts: 1
    #4
    2 yrs ago i was diagnosed with CML, and had a stem cell transplant. I do know the feelings that you are going through.. i was trated in another state than where i live ..i was very lonely the first month i was there . i basically gave up my life for about 4 months ..but believe me it all turns around. your still very young ( im 47 now ) keep the faith
  • tiggertoo
    tiggertoo Member Posts: 25
    #5
    It is ok to feel the way you do -- natural of course! Please contact the leukemia & Lymphoma Society (www.lls.org) and ask to talk to a peer counselor in the First Connection Program. They should be able to find someone with a similar experience (leuk, age, relapsed, etc.) Check for other groups that support survivors, like thru ACS or online. I have no idea why I haven't relapsed, yet other friends with a similar type of leukemia have and had transplants...just try to find something positive in your experience. Do you belong to a church or any organizations, sorority? It is so easy to feel alone in this battle but know that you are not. Go to the chat groups and you will be reminded. You can also find a ton of support there! Last October I went up to Green Bay, Wi to visit with one of my best online friends -- you can make lifelong friends here -- don't pass up the opportunity! I have been in counseling for years and I would encourage you to find someone who is unbiased and uninvolved to help you get a new perspective. It's also nice to have a safe place to "vent" any negative feelings, to cry when needed and to get the emotional support we ALL need! Blessings to you! tigger
  • pennyrn
    pennyrn Member Posts: 4
    #6
    Please don't give up. I was diagnosed with breast cancer in 1997.I was an oncology r.n. and had alot of support from my friends ,but my husband left me. I became strong through this, but lonely. In 2000, I had a bladder tumor, rec'd BCG, had a terrible reaction and was off of work for 3 months. All was well. Reunited with my husband, got a great job in nursing, then in 2003 I was diagnosed with CLL. My bone marrow was 75-80% ,enlarged spleen and liver and lymph nodes. I rec'd chemo for 6 weeks, and now have a porta cath and get Rituxin 2 times a year. Keep on going! Things have a way of working out. One amusing thing that happened to me was that I got on the chat room on this survivors network last year and someone in the room tried to implie that I was a big liar and making up my cancers! As if. You would have to be a real wackoo to fake cancer. And, why would you? So, I quite going into the chat room. I really wanted to talk to someone about my cancers but that didn't work. Please don't give up. Keep on going,people care about you. Penny
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #7
    Do either of your parents or grandparents have Chronic Fatigue Syndrome? (Or CFIDS?)

    The reason I ask is that I suspect a chemical exposure to 2-butoxyethanol for causing such ... and since it is a teratogen chemical, children of those chemically poisoned can get leukemia and brain tumors, per the World Health Organization.
    www.valdezlink.com/solvent_studies.htm#who

    I suspect it causes autoimmune lots of things, including abnormal blood sugar & hormones (either high or low)

    Sounds like glyconutrients offer good hope for helping the immune system to function more properly & thus stop whatever harm it's doing

    I asked some questions about ALS on this forum:
    www.valdezlink.com/pages/alsforum.htm and gave some helps in the links there.

    http://www.valdezlink.com/pages/notyourfault.htm#which

    Wish you could have continued school. Maybe someone could bring your assignments home and 'home school' you. You need something to keep your mind active in a positive direction.
  • Tamra_Darleen
    Tamra_Darleen Member Posts: 2
    #8
    Hi there.. My name is Tamra. I will be your friend. I am so very sorry to hear about what you are going through. You can e mail me at my e mail address sd_baby_girl06@yahoo.com

    Just to let you know, my mom was told she had A.M.L. 9 months ago, she then had a stem cell transplant, and was doing well. She had a relapse 8 weeks ago, and after 2 chemo treatments, she landed in I.C.U. It has broken my heart, as the Doctors give us no hope. We are Christians, and do know that it is never to late for a MIRACLE... I know the pain I feel, and can't even imagine the pain of feeling alone on top of everything I have watched my own mother suffer through the last 9 months.

    Please write me.. I would love to just be a friend for you to talk to.~ Tamra
  • seray
    seray Member Posts: 1
    edited February 2017 #9
    Superstar said:

    I was diagnosed with APL Christmas last year and am in remission. I know we don't have the same health issues but after reading your "story" I felt that I should send some encouragement your way. Please don't give up hope, you CAN do it!! I relate to what your saying on your friends lives going on while your life has been thrown around and shaken to it's core. It's not that they don't care, but cancer if you've never experienced it before, is scary to them too and I think sometimes they just sortof disappear as a defense mechanism. But they DO care - I've had a few of my friends say they just didn't know how to handle my illness so they stayed away. Cancer is an ugly, nasty, lonely, disease - - but it can also make you a better, stronger, more knowledgable person if you choose to stay positive. Trust me, I know it's gets tiring, and I've had days where I'd all but given up, but I didn't because I had my husband, daughter and family to think about and I wanted to live!! There was a verse that helped me through the very rough days and I want to share it with you...it's Psalms 91:14 - 16. Please look it up and put your name in there. God is listening and he cares so please don't give up hope! We're a rare breed and we're a strong one - we're fighters so hang in there!! If you'd like to email me at kvelderman@yahoo.com I'd love to talk. Don't give up on your dreams, don't let cancer win! Continue to pursue everything you ever wanted as soon as your well!

    APL

    Please tell me you're still visiting this website, I need to talk to someone so very much. 

  • Kiesmuse
    Kiesmuse Member Posts: 12
    #10
    You are still young :O But

    You are still young :O But hoping for you to get better. 

  • Amjo2020
    Amjo2020 Member Posts: 4
    edited July 2017 #11
    seray said:

    APL

    Please tell me you're still visiting this website, I need to talk to someone so very much. 

    If you need someone to talk to I'm here

    Hi, I saw you post to HopeNsurvival and just wanted to reach out. I am a AML and Bone marrow transplant survivor. My new life began with a diagnosis in October of 2013 where I was told that I had maybe 2-4 weeks left if I didn't start chemo therapy right away. I had my bone marrow transplant in February of 2014 and am now 3 years and 3 months in remission. i don't know about APL but I am willing to listen and share what I have experienced. I wish you all the best.

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