Ups and downs of Sprycel Dosage

Bit of a rollercoaster ride with my medicine.  My liver is showing signs of grumbling and to be on the safe side, the Doctor has listened to its complaints and I have gone from 60mg, to 80mg to 60 mg to 40 mg to 60mg to 80 mg and am now back to 60mg again!  I NEARLY made it to the recommended dosage of 100mg, but alas it was not to be - we have to listen to oliver and bow to his demands.  After all it's probably not him being fussy, it's probably all those years of alcohol-infused neglect that have led him to be sensitive.

There's no-one to blame if you get CML, it's not something I brought on myself through smoking or sitting in the sun too long.  I was just randomly picked on by a very small but powerful force of nature that has changed my body chemistry, starting with one single stem cell who decided to have a party in my body and needed some more friends.

I think my liver has decided that it's just one party too many and he wants a nice quiet life, he just wants to sit in front of the telly thank you very much and the only action he wants to see will involve Bruce Willis in a dirty vest or Angelina Jolie in a much smaller tighter one (I mean vest in the English sense, not the American, ie. small piece of underwear worn on the top half of your body, also called 'wifebeater')

So he's sitting on the couch with a cup of cocoa in his hand and grumbling about the tiniest increase in dosage and for now we must listen to him. But I'm staying hopeful that he'll fall asleep soon, let his guard down and get comfy; relax into his new feeling of protection and nod off.  Then we can sneak up the meds slowly - he won't even notice when he wakes up at five in the morning with a crick in his neck and dribble down his chin and a repeat of Dukes of Hazard on for the fifth time!  If not I could try bribery, but something tells me he's not going to accept a few beers as payoff.

Fingers crossed!

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 ...

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/

Biopsy Results

So, my liver Doctor called today. I really should learn his name, but he says it so quick that I don't like to ask him to repeat it! He has the preliminary results for my biopsy. It's a hepatitis of some sort but not one of the regular ones as I've already been tested for those already. Apparently there are a gazillion types of hepatitis's (or should that be hepatitisi?) I thought there was just A,B and C, so what do they do after they get to Z? And it's almost absolutely positively likely to be a reaction to the drug (Gleevec)

- It's not likely to be a virus

- It's not likely to be my body attacking my liver (now that would be just mean bullying behaviour and I would not be happy with my body if it was doing that!)

- and it's not likely to be caused by the CML

The Doctor expects that the liver enzymes will go down though he is surprised that they haven't already. He has signed me up for a thorough liver enzyme check on Thursday 9th. This just involves the Vampires taking some extra blood on that day and he says if they don't work out what's wrong soon then they will really "have to scratch their heads"!!

And this is what the liver expert says! Comforting isn't it?

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?