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Brion Gysin His Name Was Master

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Horse Pistol

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(As you all know, after thee diagnosis that we have leukemia ( a "CMML" variety) my condition got worse, we had to postpone the Fall Euro-Detour...which was a really awful and difficult decision to make. YET...we were right to postpone thee detour and focus on repairing my health.)

We began our chemo Saturn's Day 28th October 2017...a new "targeted" drug called "IHDIFA"...only passed by the FDA in September after 3 yeras of clinical trials, some at my Horse Pistol. Chemo-therapy used to be really brutal as it would literally destroy your immune system along with cancer cells. Then patients required more weeks fighting to stay alive as potentially fatal infections began opportunistically attacking whilst there was no immunity.Unfortunately this form of chemo is still an only option for many acute forms of cancer, but the landscape is changing and we have been truly fortunate to have a cancer that may respond to this newly available drug.

As we understand it, and please if you know more forgive many errors or over simplifications, IDHIFA only attacks thee mutated bone marrow cells and ignores healthy bone marrow cells. So IF it works, no/minimal damage is done to your body's metabolism. We have only had this new chemo for 4 days and need to be under constant supervision in case it does trigger any negative side effects, or weaken my metabolism further. So far my body has adjusted to thee IDHIFA well and we are hopeful this will continue. One patient at my Oncology Dept. was part of thee clinical trials for 3 yeras and is living a "perfectly normal" life, with no sign of the leukemia. We are really praying thee drug works just as perfectly for me.!!!
If it does eventually balance out that way all we will need to do is take one pill a day for my L-if-E...

On Monday 30th October 2017 we received our first ever blood transfusion. This is to give a boost to my own depleted blood and renew my energy a little. It was a very weird thought to have a living part of another being mixed into my blood inside me. It felt surprisingly alien and intimate. We had been told we would probably be in the Horse Pistol being monitored constantly for any positive or ill effects of the chemo for 7 to 10 days.! Then yesterday around midday we were told we were doing well and could go home.


We came HOME last night to Thee Nest and are with Musty Dagger. Roxy came to assist me getting home. Leigha was with me all evening keeping me coumpany. And Mee cooked me meat and potato pies, Sunday lunch with gravy and apple crumble to feed me thee next few daze!

SO we are being very well looked after. Please understand we are NOT "cured". WSe are merely doing well so far. Still with a potentially terminal, NASTY, illness, but we feel pretty good apart from shortness of breath. Perhaps it was the transfusion but my breathing is better too. We have hardly needed to use oxygen since we got home.

We have an appointmeant with my Oncologist Dr Lee this Thursday couming on 2nd November 2017. They will do blood tests. Then discuss how my metabolism s balancing out or not...

We are hoping to recover, to at least be well enough to take part in certain tours, events and festivals next yera. in the next few weeks we will know for sure...

Most ov all we are so grateful to all of you for supporting me through this. Your messages really cheered me up and broke up the monotony too of just waiting in bed for thee next lot of blood to be taken, vital signs read and "Did you have a bowel movement today"asked !! Having a view of thee East River was a great plus, though with usually only 2 barges a day filled with oil we'd have loved a few more ships. We spent a lot of time imagining when this was still New Amsterdam and picturing sailing ships, galleons at anchor in the Hudson and East River. Native Americans bartering with settlers using wampam as currency. Usually beaver furs or shells.

Discovering we truly are loved, and knowing we were in thee best of medical hands has been a revelation. There is still so much uncertainty. Never knowing when we will be called back in, or kept in how long, or released is stressful. Knowing there is a ticking time bomb of disease inside my bones is a source of alarm coumtimes...whenever we feel maudlin though thee loyalty and dedication of all ov you and my extended famille holds me together. THANK YOU !!