Hi
friends. It's been a long time since i've given an update on Amanda's
cancer journey. I think the last big post was in March of 2021, when we
first got her Stage IV diagnosis and found the 4 lesions in her spine
and 1 in her scapula. For that i am, as always, very sorry. A lot has
happened. I'll try to summarize briefly before i get to this week's
news. First comment below this is the summary, next comment after is the
new update; skip to that if you're already up to date before last
Thursday. The whole update is over 2500 words, i'm sorry, but there's a
lot.
She
started on her systemic treatments, which her type of cancer should be
very receptive to. Additionally, on the recommendation of a roller derby
friend, Bryan, and with the approval of her doctors, she started taking a
turkey tail mushroom supplement daily. This was recommended by the
research of world-renowned mycologist Dr. Paul Stamets, whom the Star
Trek character is named after. I'll link his TED talk as well, for
anyone who wants to watch it. We were told that things would look worse
before they looked better. She had another PET scan scheduled for
September.
Amanda
had consistently searched out the results of her scans before seeing
her doctors, which has led to her finding the bad news herself without
context. After the previously-referenced Stage IV-revealing PET scan and
the breakdown we had before we could see her oncologist, we thought she
should try not to do that again. So after the September 2021 PET scan,
we took off for the Grand Canyon with Alyssa,
to get away from everything for a while, including the internet,
ensuring that she wouldn't be able to find that report early. So when we
did go into that meeting with her medical oncologist, blind to what the
report would say, and came out of it with the news that everything had
shrunk and the outlook was good, we were blindsided. Shocked. Completely
unprepared. We told people, it was literally the first time we'd ever
come out of that office with good news. At this point i wanted to send
Bryan a message, "i think you saved her life," but i just...never did
that. Though at the time i honestly did believe it.
Over
the next year, the systemic treatments seemed to be working. Everything
continued to look controlled. There were some shakeups on her care
team, though. Her original medical oncologist, Dr. S, who we had
always been lukewarm on anyway, left the practice. Amanda was moved to
another medical oncologist, Dr. G, who was...awful. He was awful.
The first time we met him, he walked into the room like it was a party
and he was meeting old friends, and casually opened with, "So, how's the
rib?" Rib? What rib? What are you talking about? And that's how we
found out the latest scan had found something on her rib. She had two
more appointments with him. The third one, he didn't even show up to. He
sent his assistant in to handle the entire appointment. To be fair, his
assistant, Dr. P, is great, and before she got assigned to Dr. L,
if she could have taken on P, she would have; but Dr. P is not
actually a doctor, she's a nurse practitioner. We think she should be
the doctor. After that, Amanda requested a transfer to a different
oncologist.
That
brings us to Dr. L. L is very good. He's the most
professional of the three, he sits down with us and shows us the scans,
scrolling through the image slices of her body and explaining what we're
looking at, and most importantly, takes decisive action. Dr. S's
most grating downside was that she always went for the "wait and see"
approach, which...idk have you MET Amanda? G also had that plus
never seemed like he knew a single fact about her case and his bedside
manner was nonexistent.
On
our first meeting with L, he recommended she get a Cerianna
scan, a new type of PET scan that is so cutting edge, only 5 places in
all of LA county provide it. It's much more sensitive, and should tell
us whether her cancer is still receptive to her current treatments.
Despite
her doctor ordering it, and her insurance approving it immediately,
bureaucracy intervened; the institution performing the scan sent it to
their corporate offices for review and approval before they would
schedule the scan. They jerked us around for a month before she finally
got the Cerianna FES PET scan in September.
The
Cerianna scan revealed the rib "lesion" to be...maybe an old injury,
perhaps? It's unclear what was actually going on there, but it probably
wasn't cancer. However, it did show that there was an increase in
activity in one of the spinal lesions, which was of concern. Also, it
seemed to indicate that a lymph node on her left side was showing signs
of cancer. This is extremely unusual; the primary tumor and all the
infected lymph nodes they had removed were all on the right side, and
cancer typically does not cross from one side of the body to the other.
The doctors thought it was a "red herring," not a concern, probably not
real. Her radiation oncologist, Dr. C, who she loves and has
consistently been our favorite member of her care team, recommended
another round of radiation to target that spinal lesion and blast it
into oblivion. Dr. C also ordered an MRI to confirm what we were
looking at before starting. She put the order in STAT; it was approved
the next morning, and Amanda had the scan that afternoon, barely over 24
hours after seeing the doctor.
Meanwhile,
our renters moved out of our house, and we've decided that, given what
the Madison market is like nowadays, and that we never wanted to be
landlords anyway, it's time to sell. We made loose plans to return to
Madison and deal with that in October, after Amanda's first full
marathon, but we were delayed by these new revelations both with
Amanda's cancer, and with finding a huge cancerous lump in my dear sweet
cat D's mouth. After a few vet appointments, including seeing a
veterinary cancer specialist, we've determined there isn't anything
effective that we can do for her, so we're just keeping her comfortable
for as long as she's able to stay with us.
I
took the dogs and D and headed for Wisconsin immediately after D's
oncologist visit. Amanda stayed in LA for another week to finish out her
new round of radiation. It was the beginning of November. She flew into
Madison the same day she finished radiation.
The
plan was to have everything done - get our shit packed and into
storage, do a light remodel on the house, and have it on the market - by
the end of November, and drive back to LA together starting on December
2nd. As it is now December 13 and I am still in Madison, it's pretty
clear that we're a little off plan here. We haven't even finished
packing. We're not pleased with it but we're probably gonna be here into
January.
That brings us to the new update.
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