i gotz the PTLD afterall....

soooo.....here's the thing...maybe scrap that last post...turns out the biopsy results showed that I have PTLD after all...Post transplant lymphoproliferactive disorder. Ya...I know right. sigh...sacre bleu...i don't really know what to say...since it SUCKS so much that's not even a good enough word to describe it

so i'm in the hopsital right now, my mass or 'tumour' has grown and it's pushing up against my main cathartic (?) artery and touching all the nerves to my brain, so kind of in a serious spot. so they might start "soft chemotherapy" if this high dosage of prednisone (i'm on 100mg's of steriod a day compared to 7.5mg...yes i feel incredibly messed up) the biopsy came back a little wonky as they are not sure out of the three stages before lymphoma which the tumour cells are. 

PTLD is unique from "normal lymphoma" I think, since it is caused by me being so immunosupressed. So it looks like all the cells are just pollymorphic, which is the two stages before full on lymphoma and so hopefully the steriod can just shrink the tumour and do it's work and we back off on the immunosuppressants. 

Problem is they thought they saw some monomorphic cells which are group of cells starting to become actual lymphoma, so they also might have to do some "light chemo". But they don't want to do chemo becase obviously chemo wipes out your whole immune system and then I might be royally screwed with these new lungs. soooo it's a whole waiting game now. I hope these steriods work. so far this morning i woke up for the first time pain free in 8 weeks in my neck and head. so hopefully it shrank it a little already!? or at least helped my sinititus.

dr. said it could get better (the polly cells shrinking) but then get worse if there is mono cells, which would reproduce fast to create lymphoma....

so thats whats going on here. kind of a bummer. a real friggin' bummer. 

i almost feel like this is worse then getting a transplant...at least with a transplant you could do stuff, and help yourself...with this...it's just waiting to see if I will respond to treatment. blargh. 

it's probably been one of the worst days of my life...(and i've had some crummy ones) but this thursday topped them all after my MRI results came back and these words were thrown around "tumour" "growing" "more cells" "dangerous location" "more aggressive treatment" I think thats when I decided to check out and overdose on ativan, T'3's, a morphine pill and then to kick it all off, asked for a morphine drip on IV. Friends don't do that....the after effect is horrible the next day and it has your mother freaking out as she comes in to your room while you can't hold your eyes open, your throwing up and are the groggiest, out of it, state of mind EVER. 

Immediate freak out by one mama d-stan. 

I'm feeling a LOT better today though. First time I woke up in 8 weeks without pain in my neck or head. So maybe the steroids helped with the sinititus or fingers crossed and toes, and prayers and energy and everything else, maybe by some miracle it began to shrink the 'tumour' already?

I also JUST got net flix. hello blogosphere friends why did no one tell me about this before for hospital admissions. Watching on your computer AND first month free trial? yes please. it's amazing so far. Fantastic Mr. Fox....is actually fantastic! 


here's me dreaming of where I should be this lovely long weekend...at the beach...! sacre bleu

photo taken two weeks ago at cottage