I am overdue for a catch-up on this thing. It’s been over a
month, and what a month it has been…
Halfway through the month of December, I had to stop my
thyroid replacement medications (TRH) in order to prepare for the scheduled
radiation tracer/whole body scan that was scheduled at Siteman on 1/8/16. You
have to stop your meds for 2 weeks, because the meds suppress your Thyroid
Stimulating Hormone (TSH) and your thyroglobulin levels (cancer/tumor markers),
and your labs need to reflect your true levels. I’ve said before that thyroid
cancer will not kill you (it’s true—it’s slow-growing, totally not aggressive—usually—and
is easy to treat. You just remove the thyroid and do a simple round of
radiation). Nope—the cancer won’t kill you. Getting the thyroid medications regulated,
however, just might, as it can make you lose your damn mind.
Once you’ve got it regulated, then you’re cooking with peanut oil…but it takes
a really long time to do that, and it can change out of nowhere (weight
gain/loss, solar flare, mercury in retrograde, etc…I’m kidding. Sort of.). So,
we think we have my dosage sort of regulated…maybe…
That being said, I’ve fired my treating endocrinologist,
because either she or her staff failed to communicate the correct dosage of my
TRH to my pharmacy, and I wound up borderline-suicidal in a church parking lot,
while my poor husband contemplating having my @$$ locked in the funny farm. It
was a disaster. I transferred care to the Center for Advanced Medicine at
Barnes (since all of my other doctors are at Siteman/CAM), and had my first
appointment with the new doc this week. We’ll see how it goes; he seemed nice enough, but basically said I'm condemned to utter fatness for the next 6 months, and to stop beating myself up over it. I say "whatevs" to the skinny man...blah.
Anyways, back to December: I had to go off of the meds for
almost 3 weeks. I had no idea what I was in for. The hormones your thyroid
produces (and that the synthetic TRH tries to duplicate) affect Every. Single.
Cell. of your body (http://www.bastyr.edu/news/health-tips/2012/04/what-your-thyroid-and-what-does-it-do). Every one of them. When you have your thyroid
unceremoniously removed (without notice or true explanation), or when you stop
your TRH, your cells FREAK THE HECK OUT and you go into a horrific tailspin of
exhaustion/psychosis/stupidity that is truly unprecedented. No one can prepare
you or your family for the trainwreck you will become; you get super-emotional,
you start gaining weight like a manatee (#15 in 2 weeks!!!), you can’t stay
warm, and you don’t have enough sense to adequately explain what is happening to
you, so your family just thinks you’re being a giant douchebag.You forget things, you have (-) energy, and your brain function declines into something resembling Silly Putty.
It sucks.
That was my Christmas.
And then the floods came.
JD and I were staying at my parents’ house, which was
supposed to be a time of rest for me. However, their basement flooded, and they
had to unpleasant task of keeping the water at bay. JD had to be corralled into
the largest room of their house, and I had to chase him more than I physically
could…and THEN the highways closed, so David couldn’t come get us until New
Year’s Eve. We were all exhausted, JD was out of his routine (and acting out),
and my “break” wound up being incredibly stressful for ALL of us. Honestly, it
was just a total comedy of errors that was further complicated by nature…I’m
grateful to my family for letting us stay with them, and for as much help as
they were able to give with JD when I wasn’t able to manage him at times during
the day…but it was definitely difficult.
By the time we were finally back home, my bed never felt so good (and I
really didn’t want to crawl out). I
still had to go back to work for 1 week without my thyroid meds; by the time
the week ended, I was only able to work a half-day before coming home and
sleeping it off for a few hours. BRUTAL.
On Friday, 1/8, David and I headed to Barnes for my baseline
scan (I’d had a radioactive tracer two days before). The scan took about 90
minutes, and afterwards, we headed to Siteman to get the interpretation. I
already had my lab results, so I knew my tumor markers were up, and that my
cancer was back. I was totally prepared to deal with that—you take a dose of
radiation, you start your thyroid meds back up the next day, and all is well
for 6 months. Except….
That didn’t happen.
My scan was negative.
According to the Radiation Oncologist, because my labs show that
I have cancer, but my scan can’t find it. They believe the cancer cells are now
“smart” cells, and no longer uptake the tracer radiation/treating radiation, so
the next move is to have a PET scan at the end of this month. I really don’t
like that idea; to me, PET scans tell you a lot of stuff that you don’t
necessarily WANT to know…I realize that I’m being ridiculous about it, but in
my gut, that’s one test that I’ve never been a fan of. It’s the equivalent of
someone asking you, “How are you?” and instead of you answering with “Fine, and
you?” you instead word-vomit on them with everything they ever wanted to know
about you, your day, your ancestry, and your Instagram of what you had for
breakfast. It’s too much information, and more about myself than I really want
to know.
I told you I was being ridiculous about it. It really is the best kind of scan for what I’m
dealing with (which is NOTHING. Slow-moving, non-aggressive cancer that really
should be called something else.). It’s just super-invasive to me, and
something I’m not looking forward to.
I’m disappointed, kind of scared, frustrated at the lack of
time/money, time off of work. Driving to-and-from Barnes is an exercise in
anxiety-management for me, dragging my family into this for care of myself
and/or my son is a pain, blah, blah, blah, blah…It’s stupid. I’m totally not
cool with what’s going on right now. I’m resigned to it, but I’m not cool with
it. My biggest frustration is the nagging question of “why” that I’m struggling
NOT to ask God, but I find myself asking in the wee hours…Like, why are we
dealing with this (after all we’ve been through, do we not have enough “credit”
to get a “pass” of some sort?!?”)? Why can’t we just hit our “Easy” button? Do
we get an “Easy” button? Did we piss God off some way, that He’s hitting that “smite”
button? Are we cursed? People must think we’re cursed at this point…or just,
like, really, really bad sinners, that we’re dealing with this kind of
judgement on our lives…
I am ridiculous.
As soon as these questions flash through my brain, I smack
them down. They’re gnats from the enemy, annoyances that attempt to embed in my
heart and my brain, to take down my spiritual life. I see them for what they
are, and I try not to give those thoughts the time of day. They only lead to
pain in my heart, and they’re ultimately pointless. I want His will, and I want
to lean on Him. I want my husband and family to lean on Him. I trust Him, even
when I’m not seeing Him clearly, which I’m not right now.
He knows what He’s doing, even when I feel ultimately
perplexed. This is a season, and it will all be clear at some point. He lets me
know through random things that He’s here, and He’s listening; that He has a
point, and that He loves me ferociously. That’s what I can focus on. A lot of
people are going through a LOT worse, a lot harder, and I really have nothing to whine about. It’s the aggravation more than the physical issues that I’m
struggling with; I know SO many people that are dealing with BOTH, and my heart
goes out to them. They are far more deserving of prayers, meals, hugs, etc.,
than David & I are, because we are not dealing with a severe issue here. My TRH is regulated, and as long as I stay on
it, I’m good. I’m back on it now, so my life is fine, even with the PET scan
looming at the end of this month.
We’re good. We’re fine; JD is getting back into the swing of
things, and after a week of being a Tiny Tyrant, he looks like he grew 3” and
has finally calmed down. We are well, we will continue to be well, and we are
thankful for the health care providers that are in communication and are
managing my issues.
That’s my update…Now, if only I could nap….a lot…
