Hi many of you...(assuming more then Bluey, Gayla and Ret reading this)
will remember that i sometimes report on my condition and kept you upto date with what's upwith me. But not so much lately..dont knowwhy
Here's the state of play:
summary : I'm half crap but stable so thats fine.
Detail: Myleo Prolific Neoplasm - 50 % crap stem cells 50% good still making my own blood cells but complicationd from treatment for Kidney disease have lately reduced red cell production. Down to 98 today but no blood transfusion booked.
Detail: Kidney diease; Kidneys leak protein into urine but contrary to usual patients my blood protein levels have not dropped significantly. Kidneys holding too much creatin but not so much that it affects other processes. Tried Interferon, didn't work, tried Pontecellei protocol (all those freaking steroids!) didn't work. Currently taking cellcept an imunesuppression drug. Started 8 weeks ago at half dose and upped to 3/4 dose 4 ramping up the dose and no idea what the results are today except can see red cells down so thats a non desirable side effect. Only at 3/4 of desireable dose of Cellcept so don't know whether I'll get dose upped today or held.
So sitting in the chair getting Intragamm and reflecting.
I have done this trip to the chair over a hundred Times! Around here we don't get cake for such an accomplishment ...we just get to do it again!
I've been active with the Leukamia foundation in fundraising and more recently helping to coordinte a self help group called Our Little Group. I continue to take cupcakes into the Red Cross donors as thanks. The Red cross PR guy in Hervey Bay wants me to talk to the state PR person about something so stay tuned. I got to reply in the paper, to a report about the mortality issues of blood cancer over breast and skin cancersin the Wide Bay (region I live in) and its a bit freaky! Bluey calls me a media tart.
The Leukaemia Foundation is trailing a new way to organise Light the Night in Queensland and thats to leave the organizing to a community committee so me and two others are it this year. We have the same budget but the decisions stop with us not Brisbane. I'm going after local sponsorship as it really means something now. more on that later.
more on everything later
