i was thinking...

I WAS THINKING...

thats what i call my infusion days
thinking days
since
like yesterday
i have to lay on a bed
hooked to an iv
getting this clear liquid
covered with a brown opaque bag
like they are hiding it for all to see
not knowing
whether
its just salt water in there or is it the
real stuff
acucanumab
a potential life changing drug for me and my family
if it works
if im getting the real stuff

in 6 months i will for sure get the real stuff
for another 2+ years
hopefully by then if it works it will be on the market
if it fails
well
we start all over again

the problem is that during this 3.5 years+ of getting this
stuff
i and the others in this study want really ever know
how well its working
we get the memory tests and the scans
but
we never see the results
so
we really wont know how well this stuff is working
except
that
we wont none of us be getting worse
if it works

the further along you are with the disease
maybe
the easier it will be for you and your family to tell the difference

i always tease the nurses
you know
i say
with a serious face
i always feel smarter after i get these aducanumab infusions
they stop
just look at me
then they get it
they smile then laugh

so i was thinking on thinking day

now
i could sit and watch tv
but i decide every time i go there
to let it be my thinking day
for most of the time
its just me and my iv
with the ocassional checkin by the nurse
a few minutes with the neurologist
a few minutes with the research manager
but
mostly
its just me

its my time
my thinking time
we all need
thinking time
you know

my wife she stays out since she is squeamish about the
iv and blood drawing and all
i dont want her to become the patient
so
i like my thinking day

i solve problems
i do my garden planning my weekly planning
i do my moments of zen stuff

when i leave though
im ready
i have this blue wrap on my arm
and
a head full of ideas
and
i am always at peace with myself when i leave there

the organicgreen doctor