Thursday, October 30, 2008

Weekly checkup

Hooray for my liver! He's still doing well, working hard and getting better, Dr. M actually patted me on the shoulder in approval. If things continute at this rate he'll be hoisting me up on his shoulder and carrying me round Princess Margaret Hospital! I have to stay on the same meds at the same rate (Hydroxyurea, or Hydrea, which is a chemotherapy drug often used
first in the treatment of CML. It's lethal to mature leukemic cells and can bring elevated white blood counts back to normal; however, it does not kill many leukemic stem cells in the bone marrow, and therefore does not effectively slow the progression of the disease) But he's considering that I need to start on Nilotinib (brand name Tasigna) because it has fewer liver complications (10 people who had liver probs on Gleevec got transferred to Nilotinib and only 2 of them developed complications) or Disatinib (brand name: Sprycel) which is already on the market and 300 times more potent than Gleevec. You have to apply to the company for Nilotinib and have to have an ECG before-hand but I had a sneaky peak round some websites and found that only 15% of people taking it felt tired and it seemed to have less fluid retention and weight gain than Imatinib/Gleevec - Hurrah! Less pleural iffusions too - double hurrah (I have no idea what a pleural iffusion is and I don't want to find out)

Sunday, October 19, 2008

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.

Thursday, October 16, 2008

Swellings and rashes and gasps - oh my!

Today I went to do my blood work as usual. Usually there's an assorted collection of phials, they are all coded by colour and I've been trying to figure out what they all are. There was a new one today - light blue - I asked the Vampire what it was for and she told me it was for checking my blood coagulation, "oh" said I, "are you going to have some surgery soon? she said. "No" said I, but then spent the next three hours in the waiting room worrying that Dr. Messner was going to drop some horrible news on me. But he didn't - phew!

Liver is still doing well. (or 'Oliver' as Heather has christianed him) and I can double the hydroxyurea but have to keep a look out for swellings, rashes and shortness of breath and if I get a pain in my chest I have to go to Emergency straight away (well, duh!) Because of Oliver's prejudice against the Imatinib (Gleevec) it's looking like I will be starting the next generation, Dasatinib or nilatinib WHEN Oliver is feeling better. Only 10% of users on Nilatinib experience liver problems, so that sounds positive but I read that Dasatinib has a side effect of inflammation of fat under the skin - not good! I have a generous helping of fat under the skin and I really don't fancy the idea of it all getting inflamed. At least with the Gleevec it was just my eyes and ankles that got swollen and having slightly swollen eyes was advantageous as it hid the wrinkles ;) but swollen fat? I really can't face my bum and thighs getting more 'inflamed' than they already are!

Thursday, October 9, 2008

Princess Margaret Check-up

I'm hoping to update my liver results chart sometime soon. My liver is at last recovering - YEAH for my liver, I knew he'd pull through and didn't he do well considering all the poking and prodding he had last week?

Dr. Messner has asked to send my results to the Gleevec manufacturer so that they can study them as I've proved an anomaly (don't you just love trying to say that word?!) but now that they are at last on the down-turn he anticipates that my liver will be back to normal in about four weeks.

In the meantime he's put me on Hydroxyurea, which is a chemotherapy that I was initially on at the beginning of my diagnosis before we knew that my health insurance covered me for Gleevec. And Allopurinol, which helps the kidneys that will soon be overloaded by all the slaughtered white cells. I have to drink lots of water too so my nightime bathroom visits are going to increase!

Wednesday, October 8, 2008

Exciting Excel Spreadsheets

These are my enzyme results. They're taken from my blood sample and show how well or how badly my liver is processing the enzymes. Unfortunately I have no idea what the optimum level is but I gather that I'm not at death's door yet and they can go quite a bit higher until someone presses the "PANIC" button.

Monday, October 6, 2008

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?

Friday, October 3, 2008

Liver Biopsy

So I had to go to Toronto West Hospital for a liver biopsy which wasn’t very painful, just stressful.  I arrived at 6:45 (AM EEEeek!) but couldn’t get to the fourth floor because there was some lock on the elevator.  Eventually all patients were assembled outside waiting room at 7:00 but no staff and no chairs!  One of the patients had had a biopsy there previously and said that no-one arrived until 7:30 - she was right.  So we all had to sit on the floor until 7:30 when a staff member turned up to let us in to the waiting room. 

I wasn't seen by a doctor until 10:30 and then he did my biopsy, trying twice to get the needle in before sending me off for an ultrasound biopsy (where they can actually see what they're doing as they're doing it, so less risk of hitting the lungs etc, yes I know, why don't they do it that way anyway - I wondered that too!) So you can see why I was stressed.  

Then they wheeled me off on the gurney to another floor, still slightly sedated so the ceiling was spinning and I was feeling the whole journey like my breast or my bum might be hanging out in the stupid gown I was wearing.  The nurse in the Ultrasound fiddled round by the liver entrance hole where the previous Doctor had jabbed me and I winced. Luckily this made her realise that I needed more sedation so the rest of the visit went well as she took care of me! I even had to have one of those oxygen things on my nose so I felt like an extra on 'House'.

My liver, bless him, isn't complaining at all today.

Wednesday, October 1, 2008

Blood sample Toronto West Hospital

Went to give my blood sample today in preparation for liver biopsy tomorrow. I dropped J off at school and Matt picked him up, so I saw the vampires and then wandered off to Starbucks, had a Chai and played my Nintendo DS which Matt had wonderfully bought for me as a replacement for the one I had before we moved to Kippendavie and which has mysteriously gone astray. I'm pretty sure that I've put it somewhere 'safe' but clearly my brain decided to hide the storage place from everyone, including me!

So he's bought me Brain Age2 which is a brain exercise game (surely some tongue in the cheek poke from Matt there!)and I am as happy as a happy thing can be, or at least as happy as a happy thing can be when it is about to be poked with a long sharp needle and have important bits of its innards go outards.

ticker factory