Hey all. I've been asked for updates on Amanda's treatment. Sorry i'm so bad at this. Update below.
The
worst part about me being so bad about regular updates is that i can
never remember what the last update was. So some of this will probably
be a "Previously, On XYZ Soap Opera" type thing.
I
believe i posted about the blackouts she had after her second most
recent treatment. She was having difficulty walking more than a dozen
paces at a stretch without getting lightheaded and, occasionally,
blacking out. She fell in the parking lot at the oncologist after quick
appointment where i stayed in the car. The oncologist thought it might
be related to the white cell stimulator she was on, and discontinued it.
Meanwhile the owner of our RV park lent her a wheelchair for trips to
the bathroom or around the park. I think this was all in my last update,
so everything after this should be new information to most of you.
Our
new toilet finally arrived shortly after, and i discovered it needed an
adapter It took a few days to get that, but it was installed and in use
before her next scheduled treatment! So no more needing to run out to a
separate building every time we need to pee. Her white cells were not
high enough for her next treatment, so that got pushed by a week again.
She had her last round of the heavy drugs a couple weeks ago, and was
basically incapacitated for several days after, a usual. She didn't
actually have any blackouts after that one, but she did feel like she
was close to having one a few times, and has had to stop to rest even
just moving from one end of the RV to the other sometimes.
After
that, she got stronger and better. The lump is definitely shrinking.
She's been greenlit to start the next set of drugs (the authorization
department jerked us around for a week or so though, for some reason),
which should be a lot easier on her body. The new drugs are not
generally known to mess with white blood cell counts, so hopefully that
should not be an issue going forward. This isn't 100% guaranteed,
though; there have been outlier cases where the white cells are
affected. All we know about that right now is that it's not *likely.*
Her
family came to LA to visit last week. Her parents, sister, niece, and
uncle rented an AirBnb in North Hollywood, with a guest house and a
pool. Yes, we had concerns about them traveling and coming to visit
during the pandemic, and we addressed them as best as we could. We moved
our things into the guest house, while her family occupied the main
house. Everyone stayed masked as best as possible while interacting,
except in the pool. While swimming we attempted to stay as socially
distant as possible. In the end it probably wasn't enough...but. It was
very important for everybody to have this time together. It's the first
they've seen each other since her diagnosis, and being 2000 miles away
has been extremely difficult on her. She needed this visit. It did
wonders for her spirit. And while battling cancer, that is absolutely as
important as medicine.
We're
still in the waiting period between treatments. She starts the new
drugs on Wednesday. Hopefully things go as well as we've been led to
believe.
This
one is going to be difficult for her for another reason, though; it's
going to be the first one she has where i'm not around to take care of
her. I'm flying back to Wisconsin on Tuesday due to unavoidable business
(our renter moved out and i have to get the house cleaned & prepped
for the new tenants, get the lease signed, etc etc etc). I'll be
wearing my modified construction respirator the entire time i'm at the
airports/on the plane. Fortunately, Alyssa
is available; Amanda and the animals will be basically moving in with
her for the whole week i'm gone. There was almost a wrench thrown into
this plan when Alyssa had contact with a coworker who tested positive
for Covid, and was put into a mandatory 14 day quarantine, but she's
done with that now and has not developed any symptoms; she will be
getting tested to be sure before Amanda moves in.
I
think that's basically where we're at right now. I do want to once
again thank everyone who's donated to our GoFundMe, that campaign has
been a truly humbling experience for us and, due to our difficulties
with California's disability and unemployment programs, the generosity
of our friends and family really is what's keeping us afloat throughout
this. It's a debt we can never repay and all we can do is gush with
gratitude towards you at every opportunity.
We
also want to thank everyone who's sent postcards!! I'm very sorry we
haven't written any personal thank-yous yet but they are very much
appreciated and always a bright spot in her day when one comes in, even
the ones from my friends who don't know her personally. Thank you.
I
did already post a personal thank you to the person who sent us an
envelope full of stickers, though, because we immediately stuck them on
our faces and had to take pictures. So...that sort of tomfoolery is also
greatly encouraged.
Thanks
again everyone. You mean everything to us and we hope to see and hug
you all in person someday when the world isn't ravaged by disease.
---
I'll
just gently drop this link here again. As usual, i'll just say your
support is immeasurably appreciated, but we don't expect anything from
anyone. There's a lot of other things going on in the world right now
that need attention, and a donation to your local BLM activists or
people directly impacted by Covid-19 in our name is just as appreciated.
