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!

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.

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?

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.

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.

Off the Gleevec

Well, I've been off the Gleevec for about six weeks now. I came off it because my liver was reacting to it. I'd initially had to have an increased dose as it wasn't working too well and pretty soon my liver decided it didn't like the extra work and started complaining.

Poor old liver, I feel like I've let down a good friend. It's been there so many times for me before, working tirelessly through those Southern Comforts, Bombardiers and Mojitos and I never even said thank you, now he's unwell (funny that I should assign my liver masculinity, I'm sure a shrink would offer a reason) and there doesn't seem to be much I can do to help him. I've had no alcohol for six weeks but other than that, what can I do? The silly thing is that I'm feeling the best I've felt in a whole year. I woke up two days after no-gleevec feeling stronger, more flexible and finally alert. I've been free of 'brain fog' for six weeks now and have started losing all the weight that I'd gained on the medicine - apparantly some people lose weight with Gleevec, but oh no not me, I had to gain, though there has been a lot of comfort eating if I'm truthful.

I've barely needed a nap and have even been known to chase Jarvis to the slide and beat him down it. That would have been unheard of six months ago. To add insult to injury my blood is now better than it's been the whole time I've been on Gleevec, infact it's verging on normal, probably the reason that I have more energy as my red blood cells are back on duty.