No complaints from my Liver !

Yeah for my oliver! I've been upped to 80 mg of Dasatinib because he/it didn't complain. I haven't experienced any of the horrible cramps that I got with the Gleevec and have better energy levels too. Keeping my fingers crossed ...

My head is full of blog.

it's 5:00am. I can't sleep. My head is full of things and I need to blow it out into some enormous hanky (or should that be, hankie? Hmm, spell check hasn't rejected either.)

I have a blood checkup in a few hours time, a liver ultrasound tomorrow and it was my son's birthday yesterday. All in all I'm not feeling relaxed enough to sleep. Rather than toss and turn, wiggle, yawn and scratch my head a lot (note to self: check for headlice) which keeps hubbie awake I chose to come down here and have a glass of milk like some little old lady. Which is how I feel at the mo'. A bit stiff and a touch grouchy but hopefully not smelling of wee.

I've been on the Dasatinib for two weeks now. First 40mg, now 60mg. Liver is ignoring it at the moment and my blood work has improved - those little white blood cells that have been flooding my system are disappearing again. I'm not experiencing any bad side effects, not even the vomitting and diarroah (hmm, no red line under diarroah, could it be that I've actually spelt it right? It's a sad state of affairs when you find you've subconsciously learned to spell diarroah!)

But I have this nagging feeling that I'm more irritable than usual, a little over-reactive to things and when you have a son who is sweet and placid and well behaved and generally the most gorgeous boy in the whole world then I shouldn't be feeling 'scratchy' at him, but I have been. I had been planning his 5th birthday party. Not exactly a party per se, as I was insistent that he was not to have any presents (he already has a huge pile from friends and family and I'd told him that he could have a loot bag, just like his friends, which he was perfectly happy about) but a gathering of his friends at a play place, one of those large colourful, generally loud, padded, slidey, climby, rumbly tumbly kind of places. Just buddies having fun, no need for party games or stuff, just hanging out with the homies. I was trying to write directions for some of the Mums who were turning up but J was in a needy mode, he wanted me to build K'nex, make a sock puppet, fix his police station, play cooking and read a book, all in the space of about an hour. None of which I did because, as I kept on telling him, "mummy's busy, she needs to write directions so your friends can come to your birthday gathering". But after an hour I said (in big capital letters) "OK, I'LL PLAY WITH YOU AND FIX YOUR THINGS AND MAKE THINGS AND THEN THERE'LL BE NO PARTY TOMORROW OK? YOU CHOOSE WHICH YOU WANT - PARTY TOMORROW OR PLAY NOW? OK". Well, he could have just chosen one, but of course he chose both, which didn't do anything for my temper. I feel like a mean mum and I just hope it's not this medicine that's revealing my Mr Hyde because if this keeps my leukemia under control then I'll be on it for life and J doesn't deserve a Mum like that.

I have a dream

Funny, you'd think after I'd written my title, 'I have a dream' that I would be seeing visions of Martin Luther King, especially as he and I share the same birthday. But no, instead I have a ridiculously brain-adhesive Abba song stuck in my head. (Actually, I'm pretty sure that 'brain-adhesive' isn't a real word, but I kinda like it and think that I will nurture it and see if it grows on anyone else)

By the way, if you're here to read about my blood results, don't bother reading this post any further, there's no news till Thursday, or probably Friday as I don't get round to it straight away.

Anyway, I had a dream. And I woke up and tried to retell it all to Matt so that he could help me recall it later as my dreams have the opposite effect of Abba songs - they are KY coated - but when I asked him this evening, he gave me an extremely concise version consisting of about five words. Honestly this was one of the best and wackiest dreams I've had in a long time (excluding the one about the rabbit in the plastic bag, kicking my friend to death and the neanderthals in a cage - yes it was just one dream and no I'm not seeing a shrink yet) and it was looooong and convoluting and deserving of an essay, not five words. Anyway, here are the five words: beetle, tyrannosaurus biting, Vicky and friends and here's what I've pieced together. Amazing as it seems I'm pretty sure that this is missing some very large and important gaps, damn that Matt for forgetting, he's just jealous because he never remembers his dreams.

I was in the Grandstand of a sports pitch which was on top of a car park, it was a bit Chinese Olympics-ish. There was a game on, but I'm not sure what and it started snowing. Next to the stadium there was a very large building with white shiny walls. The walls slid open sideways and revealed lots of people in white outfits (like bakers) on different levels overlooking the pitch. They started to throw out white disc shape objects which turned into naan bread and poppadoms as they reached the field. To escape the onslaught of bread throwing I went down some stairs with Vicky and we got into Matt's beetle (it's an old white one) and carried on down into the car park where we had to negotiate round a large and aggressive tyrannosaurus who was trying to bite me through the window. Vicky didn't notice but carried on chatting and I tried to fend it off, steer round a difficult bend and listen to her talk at the same time. Eventually I drove into an area where the TRex couldn't reach me and I got out. There was a bike chained against the wall and it had a small hole in the frame. As I looked at the hole a small kingfisher zipped past me and squeezed into it. I could see it tucked away inside the hole, it's irridescent blue-green feathers lying flat inside. I had just decided that I would go and catch some small fish for the kingfisher and had relocated to an idyllic pond (not very clear how I achieved this) when there was some loud and ferocious barking and I was woken by the neighbours bloody barking dogs. Typical! Had the bastards barked earlier they could have saved me from the cold sweat, induced by a hungry Tyrannosaurus Rex, but no, they wake me when I get to the peaceful, stress-less, non-bread-battered part.

Hmm, so ... interpretations? I looked up:

Kingfisher - "This beautiful blue bird takes his meaning from his lovely color and is a symbol of great good luck" Ok, good so far

Dinosaur - "To see a dinosaur in your dream, symbolizes an outdated attitude. You may need to discard your old ways of thinking and habits. To dream that you are being chased by a dinosaur, indicates your fears of no longer being needed or useful." Hmm, not so good, but spookily, slightly accurate!

Bread (sadly I couldn't specify which types of bread)- "To see a lot of impure bread, want and misery will burden the dreamer. If the bread is good and you have access to it, it is a favorable dream. " I assume that my bread was good, because it must have been fresh from the bakers, but I am a tad suspicious, because then why were the bakers throwing it out?

My interpretation is that I need to spend more time on my friends. Vicky is my oldest friend, at least she was, I haven't been in contact with her for about five years now, the bike represents at least two friends too, that I've been feeling guilty for not phoning for a while and Matt's old beetle, stored away in a garage in England is an old friend that I have a lot of fond memories of being in.

I have a lot of friends in the UK who aren't aware of my diagnosis. It's much easier not to mention it. After all, when they ask how I am I can answer, "fine, just a bit tired" with a clear conscience. But I'm beginning to wonder if that's not really fair on them. I mean, I started this blog so I could get things clear in my head, but it should also be useful for friends and family to find out about me without having to ask me and it could be useful for those I've left in the dark so far. I'm also planning to link some kind of medical dictionary to this blog.

After trolling round some CML blogs it's become apparant that I'm not the only one having freaky dreams. Maybe they're another symptom and I should include a link to a dream analysis site.

There's a blog which was written by a man suffering my form of CML only it's not looking very hopeful and he doesn't appear to have added anything after Dec 2006 which I'm trying not to dwell on and I'm going for the 'no-news-is-good-news' option (or maybe I'm just burying my head in the sand)

Anyway, he has some very wacky dreams which make me think he is an interesting guy (see - using the IS word - obviously my glass is half full). He must be on meds and napping in little bursts and he describes his dreams as 'chicklet dreams', little snippets of stories that pop out of his subconscious throughout his sleep time. What an excellent expression.

http://ufocommander.livejournal.com/

Oh Bugger!

Some people have told me that I’m one in a million, but I’ve recently discovered this isn’t true, I’m actually 1-2 in 100,000. It turns out that after a few worrying months of me thinking I was turning into some kind of lazy and dizzy brained mother, that I have Leukemia.

There were lots of signs—extreme tiredness, headaches, mysterious bruises, changes in eyesight, shallow breathing while exerting myself etc, all of which I put down to the ‘joys’ of motherhood and lack of exercise. But eventually I decided to see my Doc and went back one week later to collect my blood work results. The Doctor sat me down, apologised for giving me such awful news on a Friday afternoon, told me that he’d do something for me on Monday morning which would probably involve bone marrow biopsy and CT Scans. I knew it was serious when he gave me his home phone number and told me to call any time. And he’s not even a private doctor! By the time I’d staggered home in a daze the phone was ringing and it was my Doctor who’d spoken to a haematologist who said that I should go to Accident and Emergency straight away. My blood was completely messed up, I was producing too many white blood cells which was affecting my red blood cells and platelets, so that I didn’t have enough and I was at huge risk of a heart attack.

I was started on chemo medicine straight away which began killing off the white blood cells, but that meant that my kidneys were overloaded so I had to take kidney medicine too.
So far I’m one of the lucky ones who experience very few side effects—my spleen has shrunk back to normal, it was four times the size it should be as it tried to cope with the overload (I’d thought I had trapped wind for about a month!)
The only thing that’s a real problem for me is the tiredness. I’m so irritated that the reason I went to the Doctor was because I was tired and I get prescribed medication with a tiredness side effect!
So, I've been diagnosed with CML - Chronic Mylogenous Leukemia. I'm now on very expensive medicine called Gleevec, (hooray for health insurance!) but it's not going to cure me, it's just going to control it. I am going to have to take this medicine and put up with all the side effects (I just hope I don't get them ALL!) for the rest of my life! Though of course, the one question I have is, how long is the rest of my life?