Mugga and PFT

Hmm, had my Muga and PFT thingy today.

Muga -At a high level, the MUGA test involves the introduction of a radioactive marker into the bloodstream of the patient. The patient is subsequently scanned to determine the circulation dynamics of the marker, and hence the blood. The patient is placed under a gamma camera, which detects the low-level gamma radiation being given off. As the gamma camera images are acquired, the patient's heart beat is used to 'gate' the acquisition. The final result is a series of images of the heart (usually sixteen)

The Muga was quite a curious sensation. The injection fills you with some kind of nuclear medicine to determine whether the heart's ventricles are healthy. He told me it would feel kind of warm, but he didn't warn me that certain areas would feel warmer than others. I had a horrible sensation of having wet myself! I could feel hotness flooding through my .... well, you can guess what part can't you?! I was put under a Gamma Camera and then the staff all vanished behind a little screen for a few minutes while I twiddled my thumbs. I've heard that there's some kind of alarm that you set off if you go through the American border within a few days of having had this test but I didn't get to find out, although Matt's seen someone else set off a big alarm there and hoards of Police appeared from nowhere and swarmed the car. That would have been quite exciting, but only worth doing if it was going to be hoards of Firemen, in my opinion!

The PFT was more activity based and involved me sitting in some sealed glass cupboard, with a clip over my nose and a tube in my mouth. I was instructed to take as big a breath as I could while they measured something and also had to do some strange panting dog thing with the Doctor cheering me on like some strange kind of manic dog trainer! Most peculiar. I left with a piece of paper, which didn't say very much except 50% which didn't sound very good. This test is so that my Oncologist will know if I'm ok to take the Nilotinib, which I want, so I'm hoping to pass. 50% didn't sound like a pass to me, but Matt looked it up - apparantly 50% is normal. Hooray for a C grade!

Aha! Red blood cells are normal this week, platelets are normal. Leukocytes are normal and liver is returning to normal. Good grief, could it be that I'm 'normalising'? if it wasn't for those damn cancerous cells circulating round like hungry sharks I could celebrate (only not with alcohol as I'm still banned!)

Dr. M seemed happy to put me on Sprycel/Dasatinib which you only have to take once a day once Oliver is in the clear. But I've asked for Tasigna/Nilotinib which has to be taken twice a day on an empty stomach because it seems to have fewer side effects, most particularly less people feeling tired and with less weight gain. I figure that I can be a better Mum if I have more energy, so it's got to be worth the medication constrictions

Double Booking

I have been double booked! Not in the exciting, "woohoo, I have two party invites for the same day, ooh, which to choose?" type excitement. No, it seems I am wanted at two different hospitals at the same time for a varied selection of investigative probings and exams - NOT really the same thing at all. Though some people probably get excited about probings and examinations, sadly; I am not one of them.

I have to be at The Toronto Western Hospital on 8th December at 11am for a Portal Vein Doplar (something sonic echoey a bit like whales talking to each other?) and an Ultrasound (to see my bouncing not-a-baby liver) AND I have to be at Mount Sinai Hospital at 8:30am for a PFT (Pretty Fucking Traumatic test?) followed by a 10:15 Mugga injection and scan. How amazing. You wait all year, trying to avoid invasive and stressfull examinations and suddenly three come along at once!

I'm not sure what these tests involve so far but I'm pretty sure I'll have to re-schedule some of them. The PFT is a lung check and the Mugga jobby is a nuclear medicine test with a gamma camera, so I might be glowing in the dark after that one, which will be useful next time I can't sleep and have to get up at four in the morning - at least I will be able to see my way down the stairs in the dark! They're both checks that need to be done if I'm going to start the Tasigna/Nilotinib.

The Portal Vein Doplar and Ultrasound are both checks on my liver, which hopefully don't involve the stabbing of long needles as used the last time a Doctor showed interest in my liver. The walk between the two hospitals takes 22 minutes according to Google Map (so nice that it gives me walking directions as well as driving) so I'm guessing I'll have to defer the portal vein doplar test at Toronto Western.

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)

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/

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!

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!