my brain feels like MASHED POTATOES

so, here we are.
fighting the good fight.
this shit sucks
if its not one thing its the other.
melanoma is definitely gone from the small bowel
so, thats very nice.
double checked with the oncologist today and just confirmed expectations for the braf and mek to continue working.
i have my hopes up to a few years and thought that i had made it up, because i can pick and choose what i want to read and listen to.
she confirmed that she expects about a year.

went to the neurosurgeon on thursday with new MRI of the spine, i was confused with the reading because all of a sudden i couldnt really tell where the tumor(s) was and if it was growing,  etc
apparently, "the tumor" is not A tumor, but diffuse tumors along and in the spinal cord that are no longer amicable to surgical intervention.
so, was basically told by the neurosurgeon he is at the end of the line with surgical intervention right now.
referred us to neuro oncologist at UCSD to have them addressed "medically"  (which is really either by medication and/or radiation)

ran it by oncologist that treats the melanoma and pretty much thought it was a good idea, but medically or chemo is not an option to treat the spinal tumors because 1) it does not have efficacy 2) if its tried that would mean melanoma meds that are working would be stopped and that aint a good idea.  guess we go see him and get ideas,

there is talk of the neuro oncologist sending to radiation oncologist and perhaps getting radiation to the spine to slow those tumors down.

so basically, yeah!! we have a year or so till the melanoma goes crazy, but in the mean time, get spinal cord injury so bad that its disabling.

which in intself is okay, i suppose people go around in wheelchairs and have a life.  we just need to figure out how that looks.

the VA has a regional program with hubs of spinal cord injury primary care and phil was accepted to their program.  which is HUGE.  there are alot of opportunities and this is what has happened over the last few weeks.

was accepted to the program
had an inital couple hour visit to met the physician and staff
yesterday, went to their PT/OT/rehab clinic and was assessed and fitted for a custom wheelchair.
hopefully it will be something lightweight that phil can manage himself from the truck.
started PT there, which is good because its all spinal rehab, its in lajolla, so short drive, is going there 2 a week now (has completed his outpatient PT with ella and cancelled project walk)
set up telemed and now has the capability to have "clinic" visits from home via video

so much spinal support there, that i dont even know what i dont know.

as you may be able to tell, adjusting to the new normal.
we may be slow learners, it seems that we should be able to have anticipated this, but adjusting to not being able to reverse the inablity to walk sucks.
we are adjusting to what the the day/weeks will look like
its just super weird to not be industrious in a workplace.

it also just sucks not being able to plan anything
or a future
or anticipate anything.

things that are good:
- had a nice visit with maryann and phil
-had a good visit with maxy and his girlfriend sarah
-phils sister susie and family are coming for fall break
-the weather is spectacular and we were BOTH in the pool exercising today
-side effects from the endoscopy were NOTHING
-we are set $$ wise, so no worries there
-phil is still cute
and smart
and funny
and caring
and my #superphil


so, there ya have it....mashed potato brain.
however, as usual, if i blogged more, betcha a million dollars i would feel better, cause i do now.

try to keep ya posted as life changes.

-