Hi friends, i've done a poor job of posting updates on Amanda's treatment. See below.
I haven't posted an update on Amanda since April 2nd, and i'm sorry. So here's what the last month has looked like.
After
being jerked around by the system for a while, in no small part due to
that clinical study i mentioned, (which she ended up being rejected from
anyway), she finally had her first round of chemo three weeks ago. They
say the effects of the first dose are usually felt about 2 days later,
but they hit her after about four hours. She felt like complete shit
and basically didn't leave the bed for a couple days, and after that she
could only walk or stand upright for short periods of time for about
another week. She was feeling pretty well back to normal almost 2 weeks
later, just in time for her second scheduled dose. She went in for a
blood draw the day before. The results came back that her white blood
cell count was too low to receive chemo; from what i understand
proceeding would carry a high risk of causing leukemia. So we
rescheduled to this week.
Meanwhile,
her hair started falling out, which she's been having a hard time
dealing with. Within a few days of that starting, her scalp was hurting
so much just from the weight of the remaining hair, that she made the
decision to shave it off. With Molly's help over Zoom, i buzzed her down to 1/2". She's more comfortable now, but still adjusting to it.
So
she was supposed to get her 2nd round yesterday, but again her white
blood cell count was too low, and they've rescheduled to next week.
She's getting very anxious to continue treatment. She definitely felt
like the tumor had shrunk a bit after the first dose, but now she says
it's starting to cause pain in her boob again, which she hasn't felt
since the first round.
That's
where we're at right now. Hoping to get things back on track next week.
She's trying to up her vitamin c and protein intake, since that's the
best advice on upping white blood cell counts we can find, although the
link seems tenuous at best. Otherwise there's really nothing we can do
but wait for them to bounce back.
People
are always asking what they can do to help, and i always say there's
really not much. I'll gently post the link to the GoFundMe Elizabeth
set up for us again, hopefully without seeming pushy, i know everyone
is hurting right now. It's been over a month and we're still absolutely
stunned by the support we've received through that. Right now we're
doing okay financially, in no small part due to the GoFundMe, but her
short-term disability claim doesn't seem to have been approved yet and i
still haven't gotten my unemployment figured out - someone from EDD is
supposed to call me within the next few days, so hopefully i'll get that
sorted soon. So that's probably the easiest thing, but i was thinking
that a more personal thing you could do is send a postcard. One of her Reservoir Dolls MRD
teammates sent a couple postcards a few weeks ago and it really meant a
lot to her. I haven't told her that i was going to suggest this online,
and she doesn't go on Facebook more than about twice a year, so at this
point it could still be a great surprise.
Thanks
again everyone for all the love and support we've received through
this. I hope you're all staying safe and sane out there.
