Since
the house was taking so long, Amanda needed to fly back to LA for her
next regular (FDG) PET scan on December 5, leaving me alone in the house
with D and the dogs. The hope was that i would be able to finish the
house on my own and then drive back to LA mid-December. However, since
airline pricing is so unpredictable and weird, it actually was cheaper
for us to book her a round trip flight than a one-way. She had
appointments with Dr. L on Thursday Dec 8, and Dr. C on Tuesday Dec
13, so she picked a return flight the night of the 13th to be back in
Madison on the 14th. If i did finish the house and drive back before
then, she would simply not get on that plane, and we would still have
saved money. Otherwise, she could come back to help me and we could make
the drive together.
The
day after the scan, she got a call from Dr. C's office that they
had to reschedule her appointment all the way to mid-January, because
Dr. C is taking a vacation. Amanda's natural response was to see
if she could reschedule her flight to the day of or after her other
appointment, but unfortunately it would have been very expensive, so we
decided to leave her in LA until the original flight.
Thursday came. Amanda does not like going to appointments by herself, but unfortunately, Alyssa
was not able to go with her, due to being asleep ahead of her 2nd shift
at work. Amanda elected to put me on speakerphone, so i could at least
listen in and try to take some notes.
The
purpose of the scan was to see how well the cancer had reacted to the
radiation, so the expectation here is that we’re going to hear "the
lesion in that vertebrae is gone!" or "is inactive!" or "shrank by this
much!"
That is not what happened.
While
the targeted spinal lesion is not, in fact, noted on the report,
suggesting that it's no longer a primary concern and suggesting that the
radiation worked, the report does show additional new bone lesions. It
is now showing four or five cancerous lymph nodes on the left side. And
worst of all, three or four grape-sized lesions in her liver.
This
whole time, we've been grateful that, if it had to be Stage IV, at
least the spread was in the bones. Cancer grows most slowly in the
bones. Treatments are much easier in the bones. Now that it's in her
liver, in the tissues, it can grow and spread at an accelerated rate.
On
top of that, it's now confirmed to be heterogeneous; it's mutating.
This means it's not the same cancer we started with. It's obvious now
that her current treatment plan is no longer effective, and we're going
to have to switch to something more aggressive, but Dr. L can't
prescribe anything until we find out what kind of cancer we're dealing
with. If there’s a silver lining to this at all, it’s that we can biopsy
a liver; bone biopsies are apparently very difficult and usually the
sample gets crushed if they are attempted. All things considered, we’d
still rather it had stayed in the bones.
I’m
not sure where the best place in the story is to put this detail, but
i’m gonna drop it here. One weird thing that keeps coming up is the
results of her FDG PET scan from June. At the time, the scan report
hadn’t shown anything concerning. Each time she gets one of these scans,
though, the imaging department compares it to all previous scans, to
track the progress of the disease. The report from the FES PET, the
Cerianna scan, refers back to the June scan to mention some things found
then, which weren’t on the report, including an allusion toward the
heterogeneity. This scan, the December FDG PET, also refers back to the
June scan, in some ways showing that the June scan could have predicted
the developments we’re seeing now. Why, pray tell *the fuck,* wasn’t any
of that on the June report??
Dr. L ordered a liver biopsy, STAT, to be collected within a week of
her appointment, but even after collection it will take up to 6 weeks
to get results. He laid out the testing timeline for us; how long it
takes for this test to run, that culture to grow, etc. so it's not like
they're just sitting on the sample for up to 6 weeks, it's literally
just that running the tests actually takes that long. This is still
incredibly maddening, though. The liver lesions did not appear at all on
the September scan. Now here they are at the beginning of December.
These new developments have all happened sometime within the last two
months. What is another six weeks going to bring?
L's office, which i can't stress enough is the same office as Doctors S
and G, did not submit his STAT order until the next day, Friday.
Amanda called to check on the status and they told her that a STAT
order will still take 24-72 hours to process. What! What is that?! The
STAT order from Dr. C's office was fulfilled in less than 24
hours! Why does this office take so long to do anything???
Her
flight is still scheduled for tonight. Monday morning, she was able to
confirm that it has been approved, but the office that does the
scheduling has not been returning her calls. The one lady she talked to
at the office was even gruff and combative about it, only offering to
email the person in charge of scheduling and being surly about that. A
little later, they called her, but it was an automated message that
asked her to leave a voice mail. Motherfucker you called us, why are WE
leaving the voicemail???
Dr.
L straight out recommended that she get better health insurance.
During the appointment, he went on about how he's a good oncologist, he
knows what he's doing and he knows he can treat this. He knows every
cancer specialist in LA county and all the way to San Diego. He name
dropped a particular specialist he wants to send her to at UCLA, but she
charges $2000 for a 45 minute consult and he knows our insurance isn't
going to cover that. He said her case is going to get complicated in the
next six months to a year.
We're
devastated by this news. It's not what we expected to hear right now.
This was just supposed to be a follow up on the radiation, not...this.
It's been very difficult to be 2000 miles apart right now. Amanda is
fortunate to be staying with Alyssa at least, and i've been glad to have our dogs and D to snuggle with, and Nat, Anna, and Ashley
have been available to talk me through some of the darkness. But it's
been rough. I was kicking ass on the house the first four days after she
left, and now i've just ground to a halt. Nat helped me with some
packing on Sunday, and when she left, i thought i was inspired and
energized to get back at it myself Monday, and then yesterday...i could
not get started. It took me all day to write this update. I didn't even
get started until almost 7pm, just stared at my screen and despaired. I
don't know what to do.
Amanda's
insight on the situation is that the cancer is a part of her, it grew
from her, so of course it wouldn't be a normal cancer. Of course it
would fight for itself every step of the way. That's what she would do
and that's what she is doing, so why wouldn't the cancer do the same?
There
was the initial shock, the sadness, the anger, but i'm gonna end this
update the same way i ended the last one. She's still a freaking
warrior. She's still on the offensive here. Her doctors keep telling
her, “you do not act like a person who has Stage IV cancer” and “cancer
patients don’t run marathons” so that still gives us a somewhat positive
outlook on the situation.
She's not going down without a fight.
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