This update starts out very bad. Please read it to the end though, it gets...less bad.
Amanda
had her PET scan on Wednesday evening. It seemed like it went well, but
she became concerned when they thought she was done, and then asked her
to move into a different position and took an extra scan.
She
already had an appointment scheduled with her radiation oncologist for
Friday. They anticipated having the scan results ready by then, so she
could discuss it with the doctor. Given that modern technology exists,
though, and that Amanda is “a persistent little bugger” (her words), she
knew the scans would be available online on RadNet as soon as they were
finished. So she spent Thursday refreshing the page regularly, ready to
pounce on that report as soon as it was available. The images
themselves came up early in the day, but she doesn’t know what she’s
looking at, so she kept waiting for the interpretation.
Shortly
before our scheduled JackBox night with Nat and Cal, i took the dogs
out to go potty. When we came back 10 minutes later, Amanda was crying,
and pushed her laptop at me with the report open.
The cancer has spread to her bones.
Positive
new lesions were found in four of her vertebrae and in her right
scapula. This is a Stage IV diagnosis. Stage IV is typically considered a
terminal diagnosis, incurable. Stage IV patients typically live an
average of 2½ years after diagnosis.
Cal
called literally minutes after we read that. Her and Nat got the full
brunt of the raw pain over the next hour or so as we talked through what
this probably means for us and the future. I started drinking. We each
had an edible. We started calling and texting Alyssa. When the edibles
kicked in, we ended the call and sat by ourselves, trying to manage our
emotions, until Alyssa finally arrived. By this point Amanda was high as
a kite and when the door opened she tactlessly shouted “Guess what! I’m
going to die! The cancer is in my bones!!” And i could see Alyssa’s
heart just drop straight out of her body. She knew she was walking in to
bad news. But that was unexpectedly blunt. We each had another edible.
Alyssa tried some scotch. We ate two packages of Oreos. We watched Into
The Spiderverse and spent the night just trying to come to grips with
this devastating new reality.
Some
would argue that Amanda shouldn’t have gone looking for that report
before having a chance to go over it with the doctor. They may be right.
I might be one of them. But at least this way, we got all of our
emotions sorted and out of the way privately, at home, before having to
go into a doctor’s office and deal with it there. And also this way, we
kind of knew what we were looking at and we were able to assemble a list
of questions ahead of time. So, there are ups and downs to doing it
this way.
The
radiation oncologist was very impressed with her for having found the
report, read it, and prepared questions. She said that she wanted Amanda
to work for her. Once she found out Amanda is a vet, she said that
makes sense, lots of vets tend to be like that.
So
she went over the report with us, and she thought this was actually not
a terrible report. First of all, she stressed, this is not a death
sentence. Yes, it’s a Stage IV diagnosis, but we caught it early enough
and the lesions are small enough that there is still a good chance they
can be targeted and dealt with productively. The most likely outcome is
that the cancer will become manageable, and Amanda will just have to be
on medication the rest of her life to manage it, like diabetes or high
blood pressure, but at least she will have a “rest of her life.” But
honestly, curing it is still not entirely off the table; it’s just a
slimmer chance. Amanda has chosen to cling to the “treatable”
possibility; that definitely seems manageable and vastly preferable to
dying at 35. We can still hope for “cured,” but she doesn’t want to get
her hopes up too much.
As Drew put it, “this is the best worst diagnosis.” Still the worst because Stage IV, but the best Stage IV diagnosis possible.
So
we have something we can work with at least. We’re still going forward
with the hormone treatments previously discussed, but there will be
additional drugs added which may or may not include more chemo. The plan
for radiation has also changed, they may be able to specifically target
the lesions and hit them directly with radiation. So there’s still
hope.
It’s
really concerning to think about some of the implications here though.
We’re lucky we caught this so early. But it only happened because Amanda
was persistent and firm with her doctors. After we got that lab report,
she wasn’t scheduled to see her medical oncologist for ten days yet;
she called immediately and got the appointment moved up to the next
morning. The medical oncologist never gave any indication she planned to
get a new PET scan, that was something Amanda wanted and demanded and
the medical oncologist ordered just to make her feel better. Given their
track record for getting orders filed timely, Amanda gave them a
two-day head start and then started calling daily to make sure that PET
scan actually got ordered. We’ll never know if that persistence is
actually what annoyed them into approving it so quickly, but we do know
this is the fastest insurance has approved anything regarding her
treatment in the last year. So if we had just gone along with the
doctors’ recommendations, let the flow carry us, and just taken everyone
at their word, we would be at least ten days behind, probably fifteen
or more, in finding these new bone lesions. Would we have still “caught
them early enough?” Would we have caught them AT ALL?
Even
with these new words of hope & comfort from the radiation
oncologist, it’s still been tough to process everything that’s happened.
These last several days since the moment we saw that report have felt
like forever and an instant at once, we have no concept of linear time
right now and if we thought we were in low-power mode before, we’ve gone
past the empty tank and are running only on borrowed energy now.
There’s still no guarantees. This is still a terrible diagnosis, even if
it’s not quite as horrible as we first thought. But she’s not going
down without a fight.
---
I
want to once again thank absolutely everyone for all the support we’ve
received through this last year. I know there is so, so much going on,
virally, politically, personally, apocalyptically, and everyone is
struggling. You have all been amazing to us and we truly have only made
it this far because of your generosity, be it the money, the meals, the
care packages, the video calls, the virtual game nights, the postcards,
and everything else. I’m just going to gently put this GoFundMe link out
here again, as always expecting nothing but humbled and grateful for
anything.
---
On
a more positive note, Amanda was able to get her Covid vaccine
yesterday! She got the Johnson & Johnson vaccine, one and done, so
she doesn’t need to go back for a second dose. She should be considered
fully protected from Covid (at least as protected as one can get) in
about two weeks. She’s definitely feeling the effects of it today, she’s
very tired, her non-surgery arm hurts now also, and she has a headache,
but it’s a small price to pay.
---
One
last bit of news. We’ve low-key been planning this since December, for
as soon as we had her post-op follow up schedule finalized. We’re coming
back to Wisconsin for a visit. Originally, due to Covid, this was just
going to be a small-scale, mostly hang out with our parents kind of
deal. Given the news we’ve just received, though, we are hoping to see
more of our friends and family. Amanda wants to hug everyone who’s
willing to hug her. We know it’s not Covid-compliant, but we are seeking
comforts in this moment, and if worst comes to worst...
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