Hi Jeanie, There is a lot to answer, so I will write in between her lines in CAPS so I don't want to miss anything that I want to say. It may also be a good idea if you put her (I don't even know) her name or maybe some of the things I would like to ask her. I believe that you must have my email address and if you want I could pass on my phone number to her. Please remember that I do this all of the time in all of these years first starting in May 21st 1989 which by the way was the day of my transplant some 26 years ago and it was also the actual day of my birth 72 years ago.
I was wondering if you could give her some advice. She is set up for a BMT but can't decide. Thanks *HI JEANIE OF COURSE I WILL HELP HER IN ANYWAY THAT I CAN...* Sent from my iPhoneI love to see people get on this page and talk about living with CML rather than dying from CML... SO YOU TALK ABOUT DYING RATHER THEN LIVING FROM CML BECAUSE YOU ARE AFRAID AND, WELL, THIS REMINDS ME OF A MOVIE THAT I ONCE SAW A LONG TIME AGO.. THE SAWSHANK REDEMTION WHERE THE ACTOR (MORGAN FREEMAN) WAS IN PRISON FOR MOST OF HIS LIFE AND HE BEFRENDED WHAT TUREND OUT TO BE AN INNOCIENT MAN BUT IT COULDN'T BE PROVEN. SO MORGAN FREEMAN (RED) TOLD HIM SOMETHING AND THIS IS SOMETHING THAT I OR YOU SHOULDN'T EVER FORGET. RED SAID "YOU EITHER GET BUSY LIVING OR DYING IT'S WHAT YOU DECIDE TO CHOOSE. I believe if you truly want to see the face of cancer walk into a transplant doctor's office... I DID WALK INTO MANY DOCTORS OFFICES AND FACED THE REALITY OF HAVING A BALD HEAD AND THROWING UP AND WHAT EVER WENT WITH IT Amazing thing is they too are living! LIVING? OH YES WE ARE LIVING BUT NONE THE LESS I HAD TO GO THROUGH THIS, AND I THINK THAT YOU SHOULD MAKE UP YOUR MIND AS SOON AS POSSIBLE AND DO WHATEVER YOU MUST DO. >From those without masks on their fave they smile, others chuckling in conversation... AGAIN YES I EVENTUALLY DIDN'T HAVE TO WARE A MASK OR GLOVES BUT I DIDN'T LOOK FOR SMILES OR CHUCKLE WITH ANYONE ELSES CONVERSATIONS BECAUSE THIS WAS A VERY SERIOUS THING AS PART OF MY LIFE, YOU HAVE REMEMBER SOMETHING THAT THIS WAS GOING BACK MANY YEARS AGO WHEN BONE MARROW TRANSPLANTS WERE FIRST COMING ABOUT AND THINGS WERE NOT AS PERFECTED AS OF IN TODAYS WORLD, SO THERE WAS NO CHUCKLING. BESIDES AT THE TIME I HAD TO LIVE IN A SMALL 6X9 PLASTIC BUBBLE IN THE HOSPITAL FOR SEVEN MONTHS! HOWEVER THIS DOESN'T HAPPEN ANYMORE, AS I SAID THINGS REALLY HAVE CHANGED FOR THE BETTER SINCE THEN. Funny part is now that I'm typed and ready to go for stem cell transplant I'm dragging my feet... THERE IS NOTHING FUNNY ABOUT ANY OF THIS, NOW YOU ARE MENTIONING THAT YOU BELIEVE THAT YOUR CML IS SHOWING SIGNE OF ACUTE? PLEASE CORRECT ME IF I AM WRONG OR POSSIBLY THAT YOU ARE WRONG. DOES THIS MEAN AML OR EXCELATED CML?? My CML has presented signs of acute and waiting to see if more meds will work is playing with fire but here on a higher dose I wait because now I'm finally scared of dying... YOU ALSO HAVE TO CONSIDER THAT YOUR MIND IS TELLING YOU THAT YOUR GOING TO GET THROUGH ALL OF THIS IN SPITE OF YOU BEING FRIGHTENED OF DYING. Maybe it's because I was just in a hospital in long term care vented and traked and I remember like it was yesterday my youngest on the phone crying in my ear as they held it there when was I going to come home and me looking out the window wondering if I was ever gonna leave or dye trying,.. I ALREADY KNOW WHERE YOUR COMING FROM REMEMBER WHAT IT WAS LIKE LIVING IN A PLASTIC BUBBLE FOR SEVEN MONTHS There are photos of me in a coma machines covering me but the one that hurts me the most that I still cannot bear to look at is of my teenage daughter asleep in a hospital chair at the foot of my bed...AT THE TIME I WAS GOING THROUGH MY BMT I HAD TWO YOUNG CHILDREN WHO WEREN'T ALLOWED TO EVEN SOME INTO THE AREA OF WHERE MY BUBBLE WAS NEAR SO I REALLY MISSED THAT BUT I ALSO FEARED THEM TO COME AND SEE ME BECAUSE I DIDN'T WANT THEM TO SEE MY THAT WAY BECAUSE IF I WOULD HAVE DIED THEN I DIDN'T WANT THEM TO REMEMBER ME THAT WAY. SO YOU SEE THAT I ALSO HAD THE FEAR OF DIENG BUT I KEPT IT TO A MINIMUM BECAUSE IT WAS MY JOB TO CONCINTRATE IN LIVING. WE ARE ALL HUMAN BEINGS AND HAVE OUR HAPPY MONENTS AS WELL AS OUR FEARED MOMENTS, BUT JUST TRY TO PUT THEM IN THE ORDER THAT YOU WOULD LIKE TO BE IN. IT'S REALLY VERY SIMPLE BUT YOU JUST HAVE TO MAKE UP YOUR MIND AND KEEP ON LIVING. BY THE WAY I HAPPEN TO HAVE HAD TWO TRANSPLANTS ONE BEING MY BMT AND THEN A KIDNEY TRANSPLANT 25 YEARS LATER. NOW DOES THAT PUT ME INTO KNOWING WHAT MY FEELINGS ABOUT MY MORTALITY ARE? OF COURSE IT DOES BECAUSE I HAVE ALREADY BEEN THROUGH TWO OF THEM I NOW KNOW BETTER ABOUT LIVING RATHER THEN DYING If the doctors had it their way I would be into my pre 30 day transplant mode but instead they wait for me to say go... I believe I truly can't until I feel in my heart I will survive... I'm supposed to be the strong one! Can any stem cell transplant survivors tell me what is going to happen because right now the uncertainty is what's killing me and the internet doesn't help! I'm going to start a blog documenting my life through this process hoping it will help others... Lord knows I will have plenty of time on my hands when I do say Go... Thanks for reading if you made it YaY! LoL A LOT TO ANSWER YOU ON YOUR FINAL PARAGRAPH... FIRST YOU MENTION THAT YOU HAVE A LOT OF UNCERTAINTY AND THAT IS WHAT IS KILLING YOU. AND THE INTERNET DOESN'T HELP. WELL I BELIEVE THAT THIS EMAILING GOES THROUGH THE INTERNET AND ISN'T THIS HELPING YOU? IT IS BECAUSE YOUR SHARING THIS WITH EVERYONE THAT IS LISTENING. WHY THEN DID JEANIE EMAIL ME ASKING IF I CAN GIVE YOU ANY ADVICE? IT IS BECAUSE I HAVE ALREADY GONE THROUGH THIS AND I AM PROVING TO YOU THAT IT CAN BE DONE. GLAD TO HEAR THAT YOUR GOING TO START A BLOG (I CALL IT A JOURNAL) WHICH I AM STILL WRITING AS OF TODAY CALLED MY LONGEST JOURNEY. SO FAR IN THE PAST 26 YEARS I HAVE DOCUMENTED 1,286 PEOPLE IN MY JOURNAL WHICH I WOULD LIKE TO SHOW YOU PARTS ABOUT A FEW OF THEM. ESPECIALLY ABOUT MY DEAR, DEAR FRIEND GLORIA. YOU SEE THIS NOT ONLY BECOMES A HELP TO PEOPLE BUT A LIFE LONG FRIENDSHIP AS WELL, AND I WILL NEVER PUBLISH IT JUST SEND PARTS OF IT OUT TO THOSE THAT CAN REALLY USE IT. I STILL DON'T KNOW YOUR NAME BUT I AM SURE THAT I WILL, AND I URGE YOU TO DOCUMENT EVERY STEP OF YOUR LIFE IN ORDER TO PASS IT ALONG TO PEOPLE JUST LIKE YOURSELFTHAT CAN USE IT, AND IN MY HEART THAT IS WHY YOUR GOING TO GET THROUGH THIS, BECAUSE IT IS JUST A BUMP IN THE ROAD. YOU KNOW I TELL YOU LIKE IT IS SO MAYBE IT IS TIME TO DO WHAT YOU FEEL IS BEST. I LEAVE YOU WITH SOMETHING ELSE, IT TOOK ME ALMOST TWO HOURS TO WRITE THIS TO YOU, AND DO YOU WANT TO KNOW WHY? IT IS BECAUSE YOUR WORTH IT. FINALLY, AND YOU CAN ASK JEANIE AND EVERYONE ELSE ON THIS CML SITE ABOUT WHEN EVERY TIME I END A POST I SEND ALONG TWO NUMBERS AND LET ME INTRODUCE YOU TO THEM AND WHAT THERE MEANING IS... 18's WHICH MEANS LIFE Marty On Mon, May 30, 2016 at 8:48 AM, 'Jeanie' via CMLHope < [email protected]> wrote: > I was wondering if you could give her some advice. She is set up for a > BMT but can't decide. Thanks > > Sent from my iPhoneI love to see people get on this page and talk about > living with CML rather than dying from CML... I believe if you truly want > to see the face of cancer walk into a transplant doctor's office... Amazing > thing is they too are living! From those without masks on their fave they > smile, others chuckling in conversation... Funny part is now that I'm typed > and ready to go for stem cell transplant I'm dragging my feet... My CML has > presented signs of acute and waiting to see if more meds will work is > playing with fire but here on a higher dose I wait because now I'm finally > scared of dying... Maybe it's because I was just in a hospital in long term > care vented and traked and I remember like it was yesterday my youngest on > the phone crying in my ear as they held it there when was I going to come > home and me looking out the window wondering if I was ever gonna leave or > dye trying,.. There are photos of me in a coma machines covering me but the > one that hurts me the most that I still cannot bear to look at is of my > teenage daughter asleep in a hospital chair at the foot of my bed... If the > doctors had it their way I would be into my pre 30 day transplant mode but > instead they wait for me to say go... I believe I truly can't until I feel > in my heart I will survive... I'm supposed to be the strong one! Can any > stem cell transplant survivors tell me what is going to happen because > right now the uncertainty is what's killing me and the internet doesn't > help! I'm going to start a blog documenting my life through this process > hoping it will help others... Lord knows I will have plenty of time on my > hands when I do say Go... Thanks for reading if you made it YaY! LoL > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
