Hello Everyone,
I have spent some times reading threads and although I probably will not contact each one, not at least now, I wanted to say my heart goes out to each one of you. I think of my son, he is 16, I am recently diagnosed with CML accelerated stage, (I can't ever do anything half, ya know?) but I am not looking at him with this disease, as many of you are, with your children. My son is autistic/aspergers, and my fears lay with what happens to him if I am no longer able to care for him. His father could not handle the autism, so over the years they have had Disney dad visits. He is good to my son, but has no real concept of his life and what he needs to function. My husband does very well with him, but unfortunately if I were not around, custody goes to the other parent.
Ok enough about that stuff, all it gets me is tears and my eyes are swelling enough now because of private crying times. I believe this site is going to be a great help and support, just in reading each of your posts, original and responses, I already feel like I have found a place where others know we worry about platelets, and blood count, bruising, clots, and all that other fun stuff that just royally sucks!
I am an odd patient or so my oncologist tells me. My white count began climbing in January, but it was still low, in range of infection or other reason, nothing to be concerned about. Then routine blood work in August showed white count still ok, but platelets were climbing toward the million mark. In the past weeks I have had them go to 1,600,000 to 1,400,000, and now back up to 1,500,000 and this is after a week of hydrea. It seems this drug is doing nothing for the platelets, so as I sit they are rising in numbers.
I was to start Sprycel last week, but UPS somehow misplaced the package, the driver was clueless, and annoyed, after telling him what it was he realize the importance of the package, but it was still lost. UPS states there is going to be internal investigation, ok, but you know, that really isn't on the top of my priority list of problems. New package is supposed to be delivered tomorrow. So I wait.
The one major thing I did, and now would like to turn back the clock to undo, is look up all the information I could find, I did use credible sites, but now that I have succeeded in scaring myself half out of my wits (and I really need the other half, not so sure I had a full head at the start) I am claming every thing that happens to me as a major event. I go for bloodwork, dr runs his hand over my arm feels bumps, I suppose they are from being older, who knows what kind of stuff I am growing under skin that has been around almost 50 years? Anyway, immediate send to hospital for sonogram, looking for blood clots. They find none but another day I have spent from dr office to hospital. Speaking of hospitals, emergency room doctors tend to double freak out when they see bloodwork like mine. Even after I warned him I was out of whack with the results, he admitted me immediately after reviewing the labs. I had to call oncologist, speak with nurse and have her spring me from hospital bed prison. I had things to do, didn't want to sit in a bed that wasn't mine.
Thing is now I think, oh, is that pain leukemia? Or could it be because I lifted a row of cupboards today two men and a strong boy should have been lifting. Or I find lump, bump, or bruise, and I think, oh no, it is progressing. Paranoid just isn't a good enough word. And then you go to the dr's and they are all bright and chipper, telling you how well you look and asking why you are there, I forget my ninety question list as I walk out the door. I honestly think they know what I am planning and have a plan of their own.
Tell me stories, good, bad, ugly, I will listen and respond when you ask, (Or I can't keep my fingers tied behind my back). I have skipped the denial stage, kind of hard to do that when you have med bottle on the counter they want you to wrap in plastic and no one else hold, and the bargaining stage also didn't interest me, but I am in the anger/shock/crap myself stage, no concrete answers, no real positive things to look forward too until meds begin to work, or I work with them, so bring me your 'stuff' and if you wish I will share mine.
I love people and enjoy humor so I hope I offend no one here. I am aware of the seriousness of this disease and others feelings, but I have always tried to laugh at everything, emphisis on 'tried'. To be honest for some reason there is a lot of goofy stuff that happens around here, when I believe it will bring a much needed smile, I will post.
I will leave everyone with a funny for the day. I bought a new sweeper, my son actually got off his duff and offered to put it together. He worked on it for quite a while, then declared he was finished, (here comes the great part, no offense to the men on this discussion board) don't ya love disclaimers? "I am finished but I have extra parts!" I almost wet my drawers trying not to laugh. The final chapter of the sweeper saga ended today, my husband was carrying the sweeper downstairs and the bottom fell off it. I swear it took me a full minute to get myself together, it was so stereotypical it was hilarious! I told my son he was to report to the kitchen retrieve the extras he had thought were not needed, take the sweeper and directions and discover his errors. He found them, but talk about the greatest story, and the best part, I will blame it completely on his father, several years ago I was devastated because he (my son that is) attempted to hang a picture but used a hammer for a Phillips screw. I thought I failed as a mother/father role. No way, this one is on the male gender in it's entirety, extra parts usually mean something is either going to fall apart on your toe (why is it always your toe?) or when running it the item will come alive and fly off to the ceiling, only to smash down again on yep, you guessed it, my toes.
Take care everyone, Positive Thoughts and Prayers, God Bless
Pam
