TODAY is a big day for my ongoing treatment for leukemia. Thee IDHIFA chemo therapy has to be monitored constantly. Each week 4 precious vials ov my blood are drawn and checked for critical levels of white and red cells. When we were diangnosed with this bone marrow cancer my white cells were literally TEN times higher than normal. They were crowding out my red cells so we weren't getting anywhere near enough oxygen. By thee time we were in thee ER we could only walk a few agonizing slow steps before gasping to breathe and needing a rest. If you've had asthma like me you'll know how that feels like drwoning. We learned to not panic in our adolescence which helped me cope with this effect ov the leukemia. But it also meant we didn't acknowledge being ill for several awful months as we tried to WILL away these symptoms.
We understood from my Dr. that if my breathing was deteriorating again whilst on this chemo that it MIGHT indicate that thee chemo isn't working as they hope. Which could mean moving into far more brutal chemo regimens like Sean Barger ( see below) . These last couple ov daze we have been short of breath again..!This has, inevitably, made me very nervous about today's blood test results. A huge amount ov hope is riding on this chemo being effective, so please, if you can, send your deepest positivity to my bloodwork results.
ALSO, please read thee interactions below between my SELF and Sean Barger who has been fighting cancer for quite a long time. Going through far more medical misery than me (so far) and still sharing his optimism and ability to truly L-ov-E with my SELF and others. Sean is an amazing being. Please include him in all your prayers. FUCK CANCER ! and...
NOTHING SHORT OV A TOTAL HEALTH !!!
Genesis P-OrridgeGenesis P-Orridge Dearest Sean, these cancer variations are so covert and endless. You have been down spo many paths and cul de sacs....we can't imagine how frustrating it must feel. We see my Oncology Dr tomorrow morning. Will find out if this new chemo therapy is working so far, or if it isnt. The options get worse each time a treatmeant fails as you know from experience. My sincere oving hopes go with you as you try yet again to feel stable and potentially optimistic at last. BIG HUGE L-ov-E
Sean BargerSean Barger Thank You Genesis! BIG HUGE L-ov-E to you as well! Glad you wrote! I was going to write you tonight to check in on you and see how you are doing. You have been in my thoughts/my version of prayers daily. I hope tomorrow goes wonderfully for you and that the new chemo treatment is working amazingly! If you think about it I would love to know the results and how you are doing after you find out. I am still feeling very positive and happy in general just a rough time the last few days and I am really not happy about the second tube being put in my back and other kidney, but like everything else I have been through with this I will adapt learn to live without and fight through it. Good luck tomorrow and much LOVE to you Genesis! ♥️♥️
Genesis P-OrridgeGenesis P-Orridge Dearest Sean, Those tubes sound terribly annoying. NO wonder one got pulled out! There is so much that is still primitive with medicine. More like fixing a broken car than a being. We will let you know how today unfolds. Its a critical day for my chemo. We are on IDHIFA a new targetted chemo. Just one pill per day ! Butter its also very specific and hasn't been used for my cancer ( "cmml") so far...was only FDA approved in mid September...We have to confess you make a really strong and positive example to those of us just beginning this journey. Though with hindsight we were getting progressively more sick for a yera or so before we were almost totally unable to walk for lack of oxygen. Thinking it was asthma we went to ER and woke up 14 hours later discovering leukemia had been attacking me covertly for a long time...sharing my BIG L-ov-E with you. GEN