looking at the uncertainty of what will happen to him over the next 4-7 days. He has been pretty out of it yesterday and today. Yesterday the doctors on the unit said it looked like the Cytoxin may not be knocking out the Myeloma though it for sure was knocking out all of his good blood. Later Dr Callandar was more upbeat, saying it was way too early to call the Cytoxin benefit either way. It was a bit of an emotional roller coaster. Distilling the info from all the nurses and docs I think it's fair to say the next 4-7 days are a crap shoot. He may die from any number of things before he gets any benefit from the Cytoxin, and he may in fact get no benefit and have the raging myeloma on top of no red, white or platelet cells. He likely wouldn't survive that. They will keep transfusing him til it's clear whether or not he'll be able to make his own, probably in about 3 weeks.
If he survives the next week and starts to regain some strength, we may move into my sisters house in Madison to be near the transfusions. If he makes it out a month and is making/holding his own blood cells and the myeloma is just simmering not boiling, there may be some other meds to try. If he got a real bounce from them, adding months to his life, it would qualify as a miracle, but hey with all the shit this guy has gone through, he's always been able to tune into that miracle wavelength. I wouldn't bet against him.
I am numbstruck. You'd think 4 years into this myeloma thing I would have wrapped my mind around the fact it's terminal. But facing the prospect of loosing him is more than I can let into my heart except in little doses, crying as I drive the car listening to music. I gather info, synthesize, develop options for the different scenarios, and then crumble over little things. I'm forgiving my numb self and inviting her to be open to all of what's happening, the miraculous and the terrifying. I've handed off my responsibilities and am just being with him, hoping there will be more days like Saturday night Sunday morn when he was schmoozing up the nurses. It's a dark passage, and terrifying but damn it makes me in awe of Life and all the "more going on than meets the eye" of it.
3 comments:
Kathleen -- As I well up in tears, please know that John and I are with you and Gil in thought and prayers. As we are not there to tell him in person, please let Gil know that we love him. We are with you Kathleen. Love, Laura and John.
Kathleen,
However this journey develops, I know you will be grateful that you were able to be part of every step with Gil.
I am grateful that you have access yo the care that Gil needs, and that you are able to spend all this time together, free of all other responsibilities.
I know your son and your sister did not move here for this, but i am grateful that you have them close now, when your inner child is shaking in her boots, and needing the love and support of us all.
Love and prayers have no boundaries, so I'm optimistic that you feel all the good energy and strength we are sending your way.
Jacqui
Kathleen,
Please give Gil a hug from me - sending one your way too if Gil could help with delivery.
It has been such a joy to rediscover a friend 30 some years after we first met. I'm grateful for that gift and equally grateful that during that interlude the two of you found one another. Cohni and I feel blessed to enjoy the company of you both.
We're sending good and hopeful energy your way.
Much love,
Josh
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