Sep 02, 2008 - 5:14 pm
Hi - after reading all your posts, I have come to the conclusion that this happens WAY too frequently.
I was diagnosed in 1999 with CLL - did "watch and wait" for a short time and then started chemo later on that same year. I have done 2 or 3 tries at chemo and while they worked short term in the beginning - they quit working and I had terrible reactions to one of the drugs - lung lesions and my oncologist was surprised I made it. In 2006 my oncologist said it was time for a bone marrow transplant. The search began for a donor - my sisters did not match. So, it became a MUD search - a donor was found!!! The transplant was to take place in Houston at MD Anderson. I left for Houston in November for a December transplant. When I arrived in Houston, I was too sick and weak for the transplant so it was postponed - I stayed in Houston to get strong. In time, they told me they didn't think it would ever happen, I was just not ready. Well, I wasn't going to accept that answer, and by March, I was ready. Now keep in mind, my husband stayed at home but did visit me a couple of weekends during that time. I was 51 at the time and he was mid 40's so our kids (we are a blended family) were out of the home. He did spend some time with me during the actual transplant - but my main caregiver was my daughter that had to come to Houston and my mother-in-law, and a couple of other friends that took a week vacation to come.
I came home in July 2007 and have been getting stronger and stronger - my counts finally started recovering recently. And while I am not ready to work full time - I am able to do many, many things now.
However - my husband informed me last week that this has been too hard on him and he isn't sure he wants to be with me. He has moved out. I was devasted - I had worked SOOOO hard to be able to enjoy the things we used to do.
I did some MAJOR soul searching and have come to the conclusion that I am probably better off this way - I am ready to live life to the fullest now. Although, I still do a daily IV and still am on immno-suppressants along with many other meds. But, truly, if you didn't know I had been sick, you wouldn't guess - I LOOK healthy!!!
So, I thought I would check the ACS website to see if I could find any information on the statistics of this and it seems that it happens frequently - at least I know I am not alone and am in good company with other STRONG survivors!!!!