Hello Internet,
I had talked before about how tired I am, but until
yesterday, I’m not certain that I knew what tired really was. With Kangaroo coming and me worrying over my
health, I’ve been making sure to take time to care for myself. As anyone who has ADHD can attest: this is
difficult. In America, we’re conditioned
to work 24/7 by nature. People with ADHD
often feel a sense of guilt or have been conditioned to view themselves as lazy
or inadequate because of their struggles with executive function and
focus. The result is people who refuse
to rest even when they need it and people who view their own rest as a moral
failing rather than a necessity.
By prioritizing my health, I have actually done a lot to
help with my health. Even still, I am
having trouble with my allergies. My ear
was aching horribly for days even as the ringing eased, and my head has been
throbbing. I have been taking steps to
mitigate by getting up and stretching, but that can be hard. Pomodoros are effective when you have time to
do them and ineffective when you get interrupted every five minutes.
Last night, I slept on the couch. I’ve been so restless, and I don’t want to
keep Noodle awake while she is gestating.
This morning, the pain is eased but I am still feeling quite
fatigued. Yesterday, however, I had to
stop writing for a bit. Normally, I try
to get four or so pages done a day, but Monkey started a new stage of treatment
and it required her to be sedated.
I was working on a blog post but did not finish it. As Monkey drifted off, I closed my computer
to watch. Honestly, I wish I hadn’t, but
I didn’t know what else to do. Watching
was hard, but leaving the room would have been harder. Staying gave me a sense of control over the
situation, even as it made me feel totally and absolutely powerless. Being outside would have been me pacing and
waiting for the procedure to end. So, I stayed and watched.
I stayed and watched them put her under, her body so
small and limp. I stayed and watched
them apply local anesthetic while she lay still and unmoving on her side. I stayed and watched as they move her and
positioned her like a doll in preparation for the procedure. I stayed and watched as they inserted the
needle, as they took their samples, as they held her in place. She didn’t move, and I could barely see her
breathing. It reminded me of Jet when he
was put down, and that was not a comforting thought.
The procedures she had were small surgeries in a
technical sense. They were done to check
how her cancer is progressing. At this
point, Monkey should be in remission.
Based upon her genetic markers and treatment plan, she is highly
responsive toward the chemo treatment they are giving her, which gives her an
even better chance of recovery. Now,
before I continue, allow me to clarify on remission (which I may have clarified
before; bare with me). Essentially, remission is the point at which we can no
longer see cancer cells in the samples taken.
In this case, the samples being taken are blood, marrow, and spinal
fluids.
Despite how advanced our medical technology has become,
there is no way to get a full body image of our entire circulatory system. Instead, we take samples and look through
them on microscopes of varying sizes and power.
Remission is when cancer cells cannot be spotted within the samples
taken, though it may not indicate the total eradication of cancer inside of the
body (which is why treatment is continued even after going into total
remission).
Yesterday, Monkey had a lumbar puncture to draw spinal
fluid for examination and also to put more chemo in to make sure to eliminate
any cancer that may be hiding there (as cancer in the spine can spread very
quickly to other parts of her body). So
far, she has had no cancer spotted inside of her spinal fluid. She has had a number of LPs already, though
this is the first one which I have gotten to witness. Spoiler: I will become desensitized to them
in a matter of weeks, she will get them so frequently (and I know this because
I am writing this FROM THE FUTURE!)
The did one more procedure while she was out: a bone
marrow biopsy. The lumbar puncture
pierced the spine. It used a long, thin
needle to draw out the spinal fluid and then a syringe to put the chemo
in. The bone marrow biopsy was done a
bit over to her right, presumably in her hip, and the needle used is much
larger and, from what I understood, had to go much deeper.
To draw the marrow, her nurse (Koala) had another nurse
and the anesthesiologist hold Monkey in place for counter pressure. She had to use what appeared to be a handle
to drill the needle into her, though I may have been misunderstanding
that. Monkey was so small and the needle
went so deep into her. I watched Koala
spin and crank the needle into Monkey’s tiny body as two people held her in
place against it, and then I hid my eyes in my hands to keep from crying.
They draw the marrow for two tests. In the first, they will stain the sample with
dye and look to see how many cancer cells they can find. This test can be done in house, and so the
results are quicker, but they are not as accurate. The other will require the sample to be sent
out of state to a large microscope (one of three in the U.S., I think) that can
look at millions and millions of cells at a time and get a more accurate
read. This is the one they will base her
remission status off of, but it will take more time to access and get results
back from.
They took two samples of marrow from her and then
bandaged her up. Our nurse practitioner
Koala is amazing, by the way, but also practical. That part of her personality really works for
our family, but I also think it sometimes makes it difficult for her to
understand. She works with this all day,
which is a challenge in itself. We
don’t. Watching my daughter be put to
sleep, watching her be needled and moved was hard. Not watching would have been even worse.
Monkey bled through her bandage afterward. It soaked into her clothes and looks almost
like she had survived and attempted murder.
She woke up afterward and laid for forty minutes so that the chemo could
move more easily through her spine. We
came home six hours after we arrived, and I was fried to a crisp. Next week, we begin our next month-long round
of chemo, which will be even more intensive.
Two months after that will be the third, which will require week-long
hospital stays. For now, it’s four days
a week in the hospital with Kangaroo on the way.
I am exhausted, and the horizon looks stormy, but there
is a rainbow there even if there is no pot of gold to find at the end of
it. I have a good family, a healthy
marriage, and a year off of work to figure it out. This will not last forever, and while I hate
the waiting, I can honestly say that I am glad for the time.
Thanks for reading.
Sincerely,
RWS
P.S.
-Short Rest-
Books
Tower: Final Fantasy: Fated by tinygaia
0. One Piece 100% New Chapters Every…
1. Sun: Fullmetal Alchemist Vol. 1, Ch. 1: “”—?? 0% (?—?)
2. Mon: One-Punch Man Vol. 11, Punch 55: “Interruption”-59 0% (1—10)
3. Tue: Kingdom Hearts Vol. 1, Ch. 3: “The Light Within the Hand”
4. Wed: My Hero Academia Vol. 10, No. 88: “All For One”—89 78% (8—9)
My Hero Academia: Vigilantes Vol. 4, Ep. 32: “The Job”—35 56% (6—9)
5. Thu: Soul Eater Vol. 1, Ch. 1: “”
6. Fri: Samurai 8: The Tale of Hachimaru Vol. 1, Ch. 4: “Family Argument”—6 50% (4—6)
Boruto: The Next Generation Vol.??
7. Sat: Books
-Fiction: Pyramids by Terry Pratchett
-Library: Trans Medicine: The Emergence and Practice of Treating Gender by Stef M. Shuster
-YA: The Giver by Lois Lowry
-Fan Fiction: Final Fantasy: Fated to Ch. 50 by tinygaia Ch. 49—50, 96%
-Nonfiction: Salt, Fat, Acid, Heat by Samin Nosrat 0% (?—??)
View from the Cheap Seats by Neil Gaiman 26% (130—502)
-DnD5e: Player’s Hand Book by Wizards of the Coast 0% (?—??)
-Reread
Games
Tower: .hack//MUTATION
1. JRPG: Final Fantasy X-2 52% (27/52hrs)
2. Backlog: God of War ??% (??/33hrs)
3. Completion: Final Fantasy XV: Royal Edition ??% (??/125hrs)
4. Multiples: Fable: Anniversary Good 0% (0/21hrs)
5. Bioware: Dragon Age: Origins Kallian Tabris 14% (10/74hrs)
6. Series: .hack//MUTATION 74% (44/50hrs(17/23hrs))
7. Free: Persona 5: Royal
8. Handheld: Persona Q: Shadow of the Labyrinth P3 ??% (??/80hrs)
Stardew Valley
Shows
Tower: Exandria: Unlimited
1. Critical Role Exandria Unlimited Ep 3: “A Glorious Return”—8 15%
Dimension 20 Unsleeping City Ep. 3: “Pigeon Plus Ones”—17 13%
2. Anime: Digimon: Adventure Myotismon Arc 25% (23—28(3—8))
3. Online/Owned: Archer Season 2 46% (7—13)
4. Netflix: Seven Deadly Sins Season 1 29% (8—24)
5. Disney+: X-Men Season 1 39% (6—13)
6. HBO: Teen Titans Season 1 54% (8—13)
7. Movies: Firefly 21% (4—14)
Moon Knight 50% (4—6)
X-Men
Promare
Castle in the Sky
Solo: A Star Wars Story
Dumbo
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