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Brion Gysin His Name Was Master

gen gofundme desktopBrion Gysin His Name Was Master

15 November, 2017

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On Monday we went to thee Horse Pistol with Roxy and Susana. It's all ways sobering to see a large space filled with humanE Beings all suffering through chemo and cancers. Thee energy levels are really low. A room of ghosts who are aware they carry a spirit of mortality within them. A body at war with itself. There is a little cameraderie from all being in a similar situation, with only degree defining our differences.
We had four vials of blood sucked from my hand. Thee "vampire" as we know them, was confused by my Manchester humour. We said how much we "LOVED" giving blood...which she took literally and remarked that we were "weird" and she'd "never ever forget you!"
Not sure why but the rows of tiny holes in my hands are itching a lot today, and on on the left hand is painful inside thee vein. There's always issues finding veins in my arms too. One nurse tried 9 times and failed...leaving a mass of bruising for weeks after...
Thee results are given in a small office. Monday 13th my white cell count has risen a bit more.
It was 10 times too high when we were first admitted to thee Horse Pistol and diagnosed with CMML Chronic leukemia. Monday it's 4 times too high. Not good... Thee new targeted chemo IDHIFA, it turns out, has a side-effect coumtimes of raising thee white cell count. An ironic twist. Thee increases in white cells are what cause my other symptoms. Worst of which is not being able to breathe. We've had chronic asthma my whole L-if-E, so know and fear that nasty sensation of drowning in a room full of air !! When there's not enough red cells taking oxygen around all my vital organs are struggling to function. We have an oxygenator at home. Butter when we are just sitting its not so bad. Its when we move about and walk we suddenly can't breathe. Coumtimes we need to stop and sit every 20 steps or so...this really sucks. Yet we watch thee others in thee waiting room and feel so blessed, so lucky. There's a sense of isolation with this disease... its so common, yet not felt coumfortable to talk about openly yet it seems. That's one reason we are keeping this Blog. To make it OK to be sick in public with thee nasty "C" of cancer...What is it with medical waiting rooms that causes people to whisper.?
Anyway, my white cells were up. NOT GOOD! So my Dr. has told me to double my daily dose of HYDREA from 2 to 4 capsules per day. We are looking for a balance between the IDHIFA chemo
that attacks the mutation at war with my bone marrow BUT can increase thee white cell count, and thee Hydrea that reduces white cell count. If we can achieve that we MIGHT be blessed with taking several pills a day to live a RELATIVELY normal L-if-E. ( If we ever learn what that is)...

Time to take my pills! We go back to thee Horse Pistol tomorrow for more blood tests, and will let you know where we are up to with the search for that perfecting balance.

(photo by marie losier)