[SoCalGal]

Welp...after 12 years of MBC and constant treatment, my slow progression has finally sped up. Latest PETscan showed mucho metabolic activity in sternum, manubrium and lungs.

BRAIN MRI
Brain MRI no bueno, 6mm fucker in right frontal, scheduled for True Beam zap next week. New words this month: intramedullary, meninges, meningeal, intrathecal, Ommaya reservoir, Rickham port, Buckingham palace (just wondered if you were still reading)...

SPINE MRI
C2 SPINAL CORD !!! has a lesion IN THE CORD !!! which points to Leptomeningeal disease. Sob sob sob. I decided to wait on the spinal tap because I'm not putting anything into my head at this time anyhow and the taps can be false negatives and I wanted to go dance Thursday night no do a spinal tap.

Will do whack a mole approach until I can gather more opinions and gather more wits. I got fitted for the head and face suffocation mask. Why the docs let me do that "fitting" without Ativan is a mistake they won't make again. Someone had the gall to say it's like a spa treatment! Yes, if the spa you attend has a 300 pound sweaty hot sumo wrestler sit on your face while they wipe you all down with ice water. I've been to many spa treatments in my lifetime, there's never been a spa MRI machine as part of the rejuvenation!

C2 cord lesion is also the reason I'm feeling random numbness on my right (unaffected) breast, arm pit, and creepy crawlies on my scapula. All right side.

C2 lesion due to be zapped via SBRT also next week - hoping like mad it doesn't cause a terrible side effect like PARALYSIS from the neck down and hope I don't drool while I'm unconscious from the scoop of Ativan I plan to swallow prior.

L1 is again crazy hot and since I just had rads in 2016 it is too dangerous for lower paralysis for rads again and no surgery either, too complicated unless risks of surgery outweigh risk of none. L1 is the cause of random numbness in groin, right tush, right leg, outside calf and bottom of foot.

But hey, what's a little Cancer Fire among friends?!?

There is so much uncertainty with regard to treatment and options.

Not sure I can put a reservoir in my head and pour in chemo. Not sure that intrathecal herceptin will suddenly work on cancer that is herceptin resistant, and how would my allergy reaction handle herceptin in my CNS? I am the course-of-least-resistance-girl, and none of that sounds good. Also on the forefront of my mind is that I DO NOT HAVE SYSTEMIC CONTROL. I just went back on Herceptin/xeloda and have no idea if that has had one iota of affect. Too soon to know.

I did look into the her2+ CAR T trial at City of Hope. I signed consent and will be on some list for some steps in the future. It's very early phase, slow cautious enrollment, and not sure again, on my herceptin allergy and inserting engineered trastuzamab into all my hopped up Tcells. I don't quite understand all the science, but I'm on a need to know intake for now, due to extreme emotional overload. And fear. And grief. And anxiety. And F-bombs.

I also signed Death with Dignity papers and got that started. Sorted out the important who wants what with my kids, while I'm still able to interject and add stories with these various pieces and dishes and jewelry and art. And now I know what I can give away to other friends and family.

I am not writing the ending but I do not wish to be caught off guard, somewhat paralyzed and unprepared.

The rads oncologist called me at 9:30 last night to say they scheduled me for Monday. I haven't really had time to deep obsess if this is the right place for the right procedure but have kind of made peace with my inability to figure out a different plan. These same people have been zapping me for the past 23 years. They must know their stuff. The last brain zap in 2008 got rid of the spot. I'm thinking he's had 10 more years of experience, so he can surely hit this new spot with similar success.

I'm not sure how hard I am willing to fight unless QOL can be reasonable. Time in and of itself it not significant. BUT time with reasonable QOL is worth the fight.

I welcome all input and ideas!
And with much gratitude to all my friends on here, old and new, friends still here and those in a different "place" your company on this journey has been priceless.
Love, Flori