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How am I doing? (Not a medical update) That's a question everyone is asking me that "knows" about what is going on. Quite frankly, I am doing great. I have a positive attitude, I excersize, play tennis every day. I am researcing lotsof information about this condition, and due to this website, I am receiving lots of information by emails from people I know, and by postings and by research I am being led to. So I am doing well.
My spleen is uncomfortable, and tender and big, and my energy runs out at about 3 or 4 (unless my brother and sister are here then) I go above and beyond because it is/was non stop fun, and fun is really important now. but...so is rest.
I do have more tests tomorrow (August 4) and then the big appointment with the specialist on the 8th. I look forward to knowing where things stand, and am ever so hopeful all is in the early stage where I may be abe to control where it all goes. Well, no matter what stage it is at, I will use many of my wiley tactics and lots of information to chart the course going forward.
What has shifted is I know I want to simplify my life tremendously, get rid of "things" and have "experiences" and spend time with people I love. That is where I'm at.
Love and hope,
Bijou
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How am I doing? Not a medical update a personal update.
How Am I doing? Just a note here (not medical) because I am being asked this a lot by sweet caring friends. I have been so blessed with recent loving company, family and dear friends who understand, and are being so supportive in helping me with my quest to learn, to make lots of critical decisions, and to laugh! I think the most important thing is that I know and feel they understand that tho' I am being positive it does not mean I am not scared or I do not need support. I do! And I am comitted to aligning myself with only positive people and positive influences.
My spleen is very uncomfortable, and I am looking for ways to work on that - NOT hydroxyurea. I am awaiting the result of a few more tests that were done on Friday, and I am hopeful that I may be able to get into a clinical trial, perhaps the T-cell one they announced for the leukemia breakthrough. That is my next quest with my doctors.
I do get tired easier than before but am committed to do everything and anything to stop the progression of this.
I have a great "team" and am learning new things nearly daily. So, I am doing OK with a few weak, "Oh Oh" moments that I allow myself, and thats OK. The rest of the time it's - gung ho, take charge of the healing processes.