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Thank you

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Around the 22nd November my Drs decided we had to go for blood levels and other tests twice a week as my White Cell count had gone back up to 32...which, we have to admit, was a little disheartening. With so many well wishes, so much L-ov-E being sent to me by all of you, we felt pretty optimistic. Not rational, thinking back. Far more "magickal thinking" where we were assuming sincere prayers and positive thoughts would be healing enough...Still... going back up to 32 !!!...My Dr. suggested we add 2 more Hydrea capsules a day, as they tend to reduce white cell counts. On Nov 27th we discovered my white cells had gone down to 18 so went back to just 2 Hydrea a day. We had ran OUT of IDHIFA pills on Sunday 26th. the local CVS Pharmacy said they'd order them and "should" have them on Monday 27th. We assumed this would be true as its CHEMO which includes consistency as a key aspect of effectiveness and accuracy of meansurements. We went to pick up the IDHIFA Monday after thee Horse Pistol visit only to be told they "WOULD" have them with Tuesday's delivery at the latest 3pm.! But they didn't. NOW, out of left field we were told when we called my Dr. expressing my growing concern at 3 days gap in my chemo. My White Cells were down to 18..! AND we also discovered that WE were supposed to call a " SPECIAL part of CVS Pharmacy" online, or by phone only.!!! Wish someone had told me sooner.! Anyway, we called up CVS SPECIAL Delivery services and THEY were super together. Promised UPS would deliver the IDHIFA direct to my "NEST" by 4pm on 30th November. A Thursday when we also saw my Drs. for thee now weekly Blood Tests. 

GOOD NEWS !   At last my White Cells were back to "normal" at 5.6  !!! Amazing news !!! 

Unfortunately though, we have been nauseous almost all the time for the last 3 daze. We wake up each morning to having projectile vomiting, which re-occurs at least once during each day. AND we are permanently tired. But these are often side-effects of chemo therapy we have been told. It is just so frustrating to feel so out of sorts. Susana is here visiting from Spain. And though she volunteered happily to take a turn taking care of me, cooking and cleaning, keeping me coumpany, giving Roxy, Leigha and Mee a little break, we can't help feeling guilty. Like we are letting her, all of them down. Its usually me giving energy and solace to my friends whenever we can. Giving seems so much simpler than receiving. Yet we ARE SO SO FUCKING GRATEFUL, to those closest o me, my chosen famille, our network ov Beings, thee One True TOPI Tribe, all of you!!!! 

My dear friend Douglas Rushkoff dropped by last week. He saw how truly financially desperate we are and said we should do a "GOFUNDME" campaign. We said we'd be too embarassed to admit how hard things had got, and that probably nobody would believe we had nothing. Even though every artist and musician WE know is also living hand to mouth, day to day...But bless him, Douglas set it up on my behalf, and we will NEVER be able to thank him enough, nor all of you who have donated. How DO you say thank you for literally saving my L-if-E ? Giving me hope? Letting me focus, for now at least, on healing and fighting this insidious disease. Now we feel like we are fighting for us all. We have discovered special Beings like Sean Barger who is going through Hell, yet remains positive and an example to us all...

This illness has taught me there IS a network of like-minded Beings out there we call thee One True TOPI Tribe, and they LIVE coumpassion, unconditional L-ov-E, generosity, caring, forgiveness, loyalty...they even put their MONEY where their mouth is !

Discovering our message, within all we create, has found a home, activators ov thee COUM Way ov L-if-E is thee greatest gift ov all. We may never have known without getting so sick. THANK YOU, THANK YOU ALL,  ALL  WAYS...