Showing posts with label Blog. Show all posts
Showing posts with label Blog. Show all posts

Sunday, September 4, 2022

Bad News Blog IX/Waiting

Hello Internet,

            I have spent far too much time in hospitals lately.   With Noodle overstuffed with a baby Kangaroo, it is up to me to get Monkey to and from her hospital appointments.  To make matters worse, some of Monkey’s medicine is toxic and could be dangerous to Noodle, to the baby, or to both.  This means that the bulk of Monkey’s home medical treatment, as well as her attendance at the hospital appointments, is reliant on me.

            This is not so bad.  So far, I’ve done nothing too dangerous outside of overdose her on an antibiotic (which wasn’t that big of a deal, actually), but it does play havoc with my own personal sense of self and my self-esteem.  You see, I have ADHD, and this inconsistent schedule has done a lot to create more pronounced executive dysfunction in me.  Fluctuation is symptoms is normal, but as my symptoms become more pronounced, so, too, do my symptoms of anxiety, which creates other symptoms, as well.

            Lately, I’ve been experiencing a lot of headaches, sudden bouts of exhaustion, dizzy spells, and most recently an intense thrumming in my right ear.  The thrumming alleviated (and was likely caused by allergies), but the others have fluctuated.  Noodle seems to think it is stress, and I am inclined to agree.  Without health insurance, however, I have no good way of finding out.  With Kangaroo coming, Monkey sick, and Squirrel being, well, Squirrel, I can feel myself wearing thin.  I keep hoping that it will alleviate, and sometimes it does, but it would be just like the world to throw another stone, wouldn’t it? After all, when it rains.

            Even if it is stress, that alone doesn’t make it an easy problem to solve.  There are no easy solutions for stress, and with a baby Kangaroo on the way and a child with leukemia, I cannot see any real, tangible, measurable solutions in sight.  It is hard to get home in order when you spend your days waiting for the next week-long hospital stay, and it only gets worse when you consider that any routine you establish for yourself will be soon be disrupted by the appearance of yet another child and their pronounced responses to those previously mentioned changes.

            Squirrel and Monkey are both mine.  They are adopted into my heart and in my mind, but legally, only Monkey has been adopted.  Recently, I asked Squirrel if she would like to be adopted (I always wanted to wait until they were old enough to decide for themselves; Squirrel has been telling me for years that she wanted it, it was only recently that I realized my own low self-esteem was getting in the way of me taking care of her), and she echoed her previous sentiment with an emphatic, “Yes!” 

            This year off was meant to be a time where I could write, where I could reflect, but without healthcare and with the housing market and inflation, if I am to be the father I want to be, then my return to the classroom is inevitable, not potential.  Doing that will mean that I am prioritizing my family over writing, a thing that is much harder for me to do than might be easily understood from the outside.  I will do it, of course, but it also means that there is more waiting for me to begin the next stage of my life.

            In short: I like being at home.  I like cleaning, and I love writing and having time for the girls.  Lately, I do not even have time in my life to breathe or to sleep.  Part of that is dysfunction but enough of it is not.  I have a lot on my plate, and where the dysfunction makes that worse is not just the small things but that it takes the things I like and makes them into chores for me as I struggle to find the motivation to do anything other than live, and without the spoons I get back from things like video games or manga, I find myself dropping plates left and right while the sounds of them cracking around me only intensify the stress that is making me feel so sick.

            Lately, I’ve spent a lot of time waiting in hospitals and at home, waiting for Monkey’s next stage of treatment, waiting for Squirrel to stop fuming so that she can come back to the family with a smile, waiting for Kangaroo to be born, waiting for school, waiting for sleep, and waiting for the end of my year at home and the next chapter of my life to begin.  I’ve been feeling dizzy and tired, and Noodle thinks it is stress.  The waiting creates the stress but is inevitable as so little of my life is under my control, and like an Ouroboros, each new ending is just the beginning of another new stress.

 

Sincerely,

RWS

P.S.   

-Short Rest-


Books

Tower: The Giver by Lois Lowry

0. One Piece Vol. 100+, Ch. 1030: “Echoing the Impermanence of All Things”—1058+ 33% (15—43)

1. Sun: Fullmetal Alchemist Vol. 1, Ch. 1: “”—?? 0% (?—?)

2. Mon: One-Punch Man Vol. 10, Punch 54: “Pumped Up”-54.1 80% (9—10)

3. Tue: Kingdom Hearts Vol. 1, Ch. 1: “”

4. Wed: My Hero Academia Vol. 10, No. 84: “From Ida to Midoriya”—89 33% (4—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. 46—50, 90% 

-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

Squirrel: The Chronicles of Narnia: The Last Battle/One Piece Vol. 17 154—155


Games

Tower: .hack//MUTATION

1. JRPG: Final Fantasy X-2 39% (20/52hrs)

2. Backlog: 

3. Completion: 

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: God of War ??% (??/33hrs)

Persona 5: Royal

8. Handheld: Persona Q: Shadow of the Labyrinth P3 ??% (??/80hrs)

Stardew Valley 


Shows

Tower: Batman: The Animated Series

1. Critical Role Exandria Unlimited Ep 2: “The Oh No Plateau”—8 13%

Dimension 20 Unsleeping City Ep. 2: “Mutant Santa Melee”—17 0%

2. Anime: FLCL 50% (4—6)

Digimon: Adventure Myotismon Arc 25% (23—28(3—8))

3. Online/Owned: Archer Season 2 15% (3—13)

4. Netflix: Moving Pictures Season 3 67% (5—6)

Seven Deadly Sins Season 1 29% (5—24)

5. Disney+: X-Men Season 1 15% (3—13)

6. HBO: Teen Titans Season 1 23% (4—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

Starship Troopers

  

Sunday, July 24, 2022

Bad News Blog III/"Home"

 Hello Internet,


After ten days of treatment in the hospital, Monkey has come home.  Right now, she is sleeping in her bedroom, and I am in my bedroom with Noodle for the first time in over a week while she does her nursing class for the new baby Kangaroo that is coming..  I keep kissing Noodle’s back and breathing in her skin.  Words cannot adequately express how much I missed her.  Nothing can.  She is my best friend, and I am so happy to have her nearby.

It is still scary.  Monkey’s official diagnosis is Acute Lymphocytic Leukemia (ALL), which is the most common form of childhood cancer from what I’ve read.  It also has a pretty solid survival rate, and her numbers are exactly where they should be.  All of that said, it is our first night at home since her diagnosis, and it is also the first night where she hasn’t had one of us in the bedroom with her bed nearby.  It will be difficult to sleep in my bed without being able to check on her or see her vitals, but it will become our strange new normal.

There are a lot of strange things about your child having cancer that are nearly impossible to explain.  There is a sort of rage against the gods that no one can understand.  Ever since receiving the diagnosis, my wife and I have had little choice in what to do.  In theory, we could refuse treatment and seek second opinions.  In practice, anything that is not done to help her is done to hurt her, even as the medications that are used to heal her are also tearing her apart from the inside.

She is a full week into chemo.  It will take a few months before the iconic bald head comes into play, but there is so much else that happens.  Her body is so thin and frail right now, partly from an inability to keep food down and partly from muscle atrophy.  I hadn’t noticed until she had a bath when we got home (I had to help wash the port she had put into her chest for treatment).  She threw up as soon as we got home and clogged the sink with cheetos (not the healthiest, but it was a bribe to keep her eating; a lot has changed in how I parent).

There is also the strange irony of what cancer is today versus what it was when I was younger.  Survival rate for ALL is actually very high if you get it early enough, which we seemed to have done.  It is time intensive, and it will be difficult.  She will suffer a lot, and we will be there with her while it happens.  All of us will be exhausted, especially with a new baby coming to join the family.  Despite all of that, at the end of the day, this is much more like a normal sickness than I would have ever imagined it would be.  Sure, it is big, but it is no longer the death sentence of my childhood.

All things considered, we are glad to have her back home, and we are willing to do whatever we need to do to see her happy and healthy.  It will be a long two years, but as I said before, any time with her is better than no time with her.  Even with all of the potential side effects and the struggles, I got to sing her to sleep tonight in her own bed, and I will get to keep hearing her laugh and argue for years to come, and that is worth any price.


Sincerely,

RWS


P.S.

Books

0. Main: The Giver by Lois Lowry

One Piece Vol. 91, Ch. 917: “Food Treasure Barge”—921 55%  (7—11)

1. Sun: Boruto Vol. 5, Ch. 18: “The Hand”-19 50% (3–4)

2. Mon: Demon Slayer: Kimetsu no Yaiba Vol. 3, Ch.19: “Together Forever”-25 22% (3–9)

3. Tue: Samurai 8: The Tale of Hachimaru Vol. 1, Ch. 2: “Visitor From the Sky”—6 17% (2—6)

4. Wed: My Hero Academia Vol. 10, No. 82: “What A Twist!”-89 11% (2–9)

5. Thu: One-Punch Man Vol. 10, Punch 52: “Locker Room”-54.1 60% (7–10)

6. Fri: My Hero Academia: Vigilantes Vol. 4, Ep. 31: “On Tour”—35 44% (5–9)

7. Sat: (Fan Fiction) Final Fantasy: Fated bytinygaia Ch. 88% (45—50)

8. Squirrel: One Piece Vol. 17 Ch. 156

Reading Order:

-Fiction: Pyramids by Terry Pratchett 100%

-Library: Trans Medicine: The Emergence and Practice of Treating Gender by Stef M. Shuster 100%

-YA: The Giver by Lois Lowry 100%

-DnD5e: Player’s Handbook by Wizards of the Coast 0% (0–?)

-Non-Fiction: Salt, Fat, Acid, Heat by Samin Nosrat 0% (0–?)

View from the Cheap Seats by Neil Gaiman 26% (130–502)

—Reread—


Games

0. Main: .hack//MUTATION

1. Sun1: .hack//MUTATION

Final Fantasy X-2 HD Remaster 29% (15/52hrs)

2. Mon: Omega Quintet 0% (0/47hrs) Just no.

Mass Effect 2 Jean Replay (Until Further Notice)

3. Tue: DnD5e

4. Wed: Dragon Age: Origins Kallian Tabris 14% (10/74hrs)

5. Thu: Movie

6. Fri: God of War ?% (??/33hrs)

7. Sat: .hack//MUTATION 57% (40/50hrs(13/23hrs))

Xenogears 9% (6/66hrs)


Shows

0. Main: Batman: The Animated Series

1. Critical Role: Campaign 2: “Rebirth” 98% (139—141)

2. Anime: FLCL 0% (1—6)

3. Owned: Digimon: Adventure Myotismon Arc 25% 23–28 (3–8) 

4. Netflix: Moving Pictures Season 3 17% (2—6)

Seven Deadly Sins Season 1 8% (3–24)

5. Disney+: Star Wars: Visions 56% (6–9)

6. HBO: Batman 81% (26–31)

7. Critical Role Campaign 2 15—17 82%

Moon Knight 17% (2–6)

Movies: Promare

Firefly 7% (2—14)

Starship Troopers

Dumbo

X-Men

Solo: A Star Wars Story

Sunday, July 17, 2022

Bad News Blog/"Chemo"

 Hello Internet,


Noodle and I have been taking turns with Monkey in the hospital.  We stay for twenty-four hour shifts, arriving around noon to relieve one another while the other stays home with Squirrel.  I have been here for both administrations of chemo, with the second one happening only an hour or so ago.  With the last one, there was a delay in response to it, and Monkey didn’t feel it until she was with Noodle.

So far, it has been easy for me.  We hang out.  I make sure she does some school work, and I make sure she gets up for walks and eats a little bit where she can.  Chemo makes her nauseous, and so do the steroids, and so do the other medicines.  Everything makes her sick, and all I can do is sit and watch as they throw medicine into her to try and help her feel better.  The sad truth is that nothing will make her feel better for right now.  The sad truth is that she has to feel worse for a bit before she can feel better.

Noodle woke up on her second night to find the nurses and doctor’s crowding around her bed.  She wasn’t breathing.  With the chemo, they upped her fluids in the IV to try and make sure that she didn’t dehydrate.  Instead, it put fluid into her lungs by accident.  When I arrived the next day, she was  drifting in and out of sleep, vomiting, and wearing an oxygen mask.  I watched her slow recovery and got her to eat some, but by the next visit she was refusing food.  We’ve had to sit her down and explain to her that she cannot go home until she is eating food and keeping it down, and to do that, she has to eat first.

Today has been better.  Chemo can taste how things change, so we’ve been bribing her with sour patch kids; bribery has never been a part of our parenting style before.  We’re getting her to eat cheetohs, as well, and using mandarin oranges and PB&J to supplement with some form of nutrient.  We have a few other foods here with us, but there is a lot of negotiating going on here.  She wants to go home, though, and that is one her driving motivations which we can use to get her to take the medication she needs and to try the foods we offer.

None of this is easy, however, and those efforts only go so far.  She sees her sister in short visits, only an hour long at the longest, and during that time I try to steal as much time with Noodle as I can.  In the space of a night, we went from soothing each other to sleep and sharing our days in the dark to spending the evenings apart, texting like we are trying long distance in college.  All of it is hard, and none of that at all includes the struggle that is the cancer, the sickness, the vomiting, the diarrhea, the medicine, the fatigue and nausea.

She has been in good health today, though, and while I haven’t had as much time to write (this document sat open for hours unattended before I could sit down to write anything, and even once I did, it was piecemeal as I struggled to get through it while taking care of her), I have had time to talk to my wife and to talk with Monkey.  She is being brave and strong, and so is the rest of the family.  We can do this, and we will.  It will just take some time.


Sincerely,

RWS


P.S.

-Short Rest-


Books

0. Main: The Giver by Lois Lowry

One Piece Vol. 90, Ch. 901: “Don’t Let You Death Stop You!!!”—910 0%  (1—10)

1. Sun: Boruto Vol. 5, Ch. 16: “The Vessel”-19 75% (1–4)

2. Mon: Demon Slayer: Kimetsu no Yaiba Vol. 3, Ch.17: “Arrow Demon”-25 0% (1–9)

3. Tue: Samurai 8: The Tale of Hachimaru Vol. 1, Ch. 1: “The First Key”—6 0% (1—6)

4. Wed: My Hero Academia Vol. 9, No. 80: “Establishing the Bakugo Bodyguard Brigade”-80 89% (9–9)

5. Thu: One-Punch Man Vol. 10, Punch 50.1: “Headgear”-54.1 40% (5–10)

6. Fri: My Hero Academia: Vigilantes Vol. 4, Ep. 29: “Weapon”—35 22% (3–9)

7. Sat: (Fan Fiction) Final Fantasy: Fated bytinygaia Ch. 86% (44—50)

8. Squirrel: One Piece Vol. 17 Ch. 154—155

Reading Order:

-Fiction: Pyramids by Terry Pratchett 100%

-Library: Trans Medicine: The Emergence and Practice of Treating Gender by Stef M. Shuster 100% (–)

-YA: The Giver by Lois Lowry 63% (113–179)

-DnD5e: Player’s Handbook by Wizards of the Coast 0% (0–?)

-Non-Fiction: Salt, Fat, Acid, Heat by Samin Nosrat 0% (0–?)

View from the Cheap Seats by Neil Gaiman 26% (130–502)

—Reread—


Games

0. Main: .hack//MUTATION

1. Sun1: .hack//MUTATION

Final Fantasy X-2 HD Remaster 29% (15/52hrs)

2. Mon: Omega Quintet 0% (0/47hrs) Just no.

Mass Effect 2 Jean Replay (Until Further Notice)

3. Tue: DnD5e

4. Wed: Dragon Age: Origins Kallian Tabris 14% (10/74hrs)

5. Thu: Movie

6. Fri: God of War ?% (??/33hrs)

7. Sat: .hack//MUTATION 83% (36/50hrs(19/23hrs))

Xenogears 9% (6/66hrs)


Shows

0. Main: Batman: The Animated Series

1. Critical Role: Campaign 2: “Rebirth” 98% (139—141)

2. Anime: FLCL 0% (1—6)

3. Owned: Digimon: Adventure Myotismon Arc 0% 21–28 (1–8) 

4. Netflix: Moving Pictures Season 3 17% (2—6)

Seven Deadly Sins Season 1 8% (3–24)

5. Disney+: Star Wars: Visions 56% (6–9)

6. HBO: Batman 71% (23–31)

7. Critical Role Campaign 2 15—17 82%

Moon Knight 17% (2–6)

Movies: Promare

Firefly 7% (2—14)

Starship Troopers

Dumbo

X-Men

Solo: A Star Wars Story