Hi friends, thank you all for sharing your light and words of encouragement. Wouldn't be as strong as I am today without the support i've received through community. I've decided to close the discussion. Thanks you for all of your advice. I'm getting stronger each day, and most importantly.. I'm staying present and positive... living for each day and not worrying about the uncertainty of the future. <3 Looking forward to sharing my healing story with ya'll. xoxo ChinaCat
Learn more about bone marrow failure diseases here: http://www.aamds.org/
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Chels, I really like that rocking chair metaphor, haha! Thank you for your encouraging words and artistic idea, i will most definitely do that!<3
Your soooo welcome!
Peace & Love
My mother was diagnosed with a very rare form of cancer when I was 2 years old. After a year or so of treatment they told her there was nothing more they could do, and she would live 6 months at best. That was 20 years ago and my mother is alive and well. She still has malignant cancer, but it's sort of dormant in her and does not effect her in any way. Doctors can't explain it and she is the longest living Peritoneal Mesothelioma survivor known. She's involved with a program that matches up newly diagnosed cancer patients with survivors. She talks on the phone several nights a week with a couple young women all over the US who have been diagnosed with life threatening illnesses. She would love to talk to you if you're interested. Her name is Beth and her number is (845)294-4067. Please don't hesitate to call her.
Caroleeena was right about everything in her response. Be your own advocate and don't give up. Allow yourself to feel the natural emotions. I love you and like everyone else, I am here for you anytime. I'd love to take you out for dinner one day this week (or next.. whenever it's best for you). I just check my phone and I don't have your number. I can't remember if you have mine, but if not it's (845)699-8636. Please call me any time.
Casey, can't thank you enough. What an inspiring story.. i do plan on reaching out to your mother.. thank you. Thanks for being a good friend.. I am happy we live so close to eachother. I am gonna send you a text when my phone is charged. Thank you sister
<3 <3 <3 <3
Thank You. All of you.
Today I spent another day in bed crying, but I got up, made my bed and looked at myself in the mirror and smiled.
I came on here and saw what all of you wonderful amazing people have replied, and I smiled and cried tears of joy. Joyful and happy to be a part of such an amazing community full of loving and supporting beautiful souls...
I am still having a hard time accepting all of this.
Two of the worlds top PNH and AA specialists are located right here in the north east, (I am currently living in NY).
As far as bone marrow transplantation goes... it's a very sticky situation..
I have one doctor telling me that since I am young and the diseases are in the beginning stages right now that if and when I find a match, I should have a BMT asap for hopes of being cured.
And then another doctor is telling me that I should try and live a normal life and use the BMT as a last option for when I get more sick.. because BMT are not a guarenteed cure.. and is emotionally and physically demanding and come with a lot of serious risks and a high mortality rate.
So very confusing. It is true that I am young and the risks will continue to rise with a BMT as I get older and more sicker .. but then again, they also say why take the risk when you don't yet need too..
AH! Me and my mother are looking for more opinions and are gonna go see every damn hematologist/oncologist, bone marrow specialist possible.
I appreciate all of what each and everyone of you said. From your positive vibrations and loving energy to your encouraging and uplifting words.
Thank you Thank you Thank you, for making my day brighter and putting a smile back on my face.
I am facing a lot of hard facts right now.
But I will not let all of this take away my light.
I understand some days will be better than others.. some good, and some really really hard.. and its a damn roller coaster ride right now..
It is crazy how your whole life can completely be turned upside down in a matter of seconds..
I keep asking that same question, Why Me? and feeling bad for myself makes me feel selfish..
I am scared
But i am thankful and grateful for my life and my family who are behind me in all that I do... And blessed to have found this community where I am receiving even more support.
Im gonna push on and fight as hard as I can and pursue my dreams.
Thank you for listening to me and keeping me in your thoughts.
Edit- Just wanted to add in that my sister is going to be tested as soon as possible to see if she is a match. If she is not, my whole family will then be tested to see if anyone is a close match. And if not, my bone marrow will then be put in a huge database that will search it against all possible donors to find the closest match possible.. Doc's say sometimes it comes back with 1,000 matches and sometimes 0 .. so i will keep you all posted. Thank you so much again
:) <-- real smile!
I am sorry to hear about your diagnosis. I can't imagine what you are going through right now. My one main thought for you, and I'm sure I'm not the first to say it, is to live life to the fullest. I know it is difficult, but try to focus on the positive things you have in your life, whether they are family, friends, art, hooping, etc. Accept that you have this diagnosis, but don't use it as a catalyst for sadness, but as a catalyst to make you stronger. <3
Oh, Colleen. *hugs and quiet being-with*
Please feel free to tell your friends how to help you. My dad passed away a few years back from a fast-moving cancer with a very high mortality rate. His friends, trying to be encouraging, kept insisting that he would be fine. He found it frustrating and exhausting; he didn't want to spend the little time he had denying the reality of what was happening to him. If what your friends are doing isn't working for you, speak up and let them know what they can do instead--they are probably eager to be of use to you.
Please consider seeing a counselor who specializes in terminally ill patients. Learning how to work through the intense emotions that come up can help you live a healthier, more enjoyable life.
As for lyrics, Dan Fogelberg's "Ghosts" has one of my favorite lines of all time: "Death is there to keep us honest, and constantly remind us we are free."
Sending love and prayers your way. Please, please keep us posted.
I'm so sorry to hear you're going through this....you're beyond allowed to be in shock, to stay in bed, to cry. There is no "cookie cutter" way to deal with anything close to what's happening to you. Your family will be understand, strong, and also deal with it however is healthiest for them, too.
I'm blessed with an amazing family....I have two fathers (they are partners) and a mother, and I'm loved more than anyone I know. A few years ago, we found out that one of my fathers, Rob, has Parkinson's, which has progressed very fast. It's so hard to see him struggling, it makes me so scared...I'm petrified of the day we lose him. Luckily, Rob is one of the most incredible people in the universe. He's funny, energetic, world-traveled, cultured, loving, and above all, happy. Through every terrible thing we go through, I can still see the Rob I know and love, the man who raised me, cracking a joke and smiling despite it all. His positivity gets all of us through.
My mother has had lupus and rheumatoid arthritis for as long as I can remember....she's been in and out of the hospital for my entire life, always needing to have surgery because her muscles collapsed. Her hands and feet are disfigured. Now, because of the disease, she can no longer have surgery because her immune system is too weak, so we're all terrified of the next blow from the lupus. She's in pain all the time. I love my mother more than anyone in the world. I'm so afraid to lose her. She's been sick for my whole life, as well as most of her's. She didn't have me until she was 36. She was told that she wouldn't be able to have children, that it would be too dangerous. But she wanted them, so she had them. And now, 21 years later, she's still here. She's the funniest woman in the world, my best friend, the person I love being around more than anyone. She doesn't let a little thing like a crippling illness get in the way of her happiness.
My parents are a huge inspiration to me because they absolutely live in the moment. My (biological) father just beat cancer. Because of my genetics (all four of my grandparents died very young, three from cancer) I'll probably end up with a life-threatening or terminal illness. Or maybe I won't. The point is, who knows? Statistics mean nothing to the individual. 35% of this, 50% of that....you have no idea what's going to happen to YOU. You're not just some number. You're a strong, beautiful person who obviously has a loving family and a caring, supportive community to turn to. The reason I wanted to tell you my story is that my parents have beaten the odds many times - that's why I'm here at all! Live in the moment, enjoy your life. No one, and I mean NO ONE, sick or healthy, knows how long they have. You're in control of today.
I'm sending you all the love I can.
I really don't know what to say...
but I am hugging you.with my words,and with my thoughts.
make it all count.make it great.
I wish that words could say so much more than they can, but I pray that everyday gets better for you. The physical is only 1/3 of the battle, so know that your mind and spirit are strong. With this one post alone you have left a positive impact on others and I believe that that is a large part of our purpose here, to leave our footprints in the lives that surround us positive and radiant. Keep smiling, you are beautiful inside and out! <3