Brain Tumor · House and Home

Turtles All the Way Down: A 100% Spoiler Free Review

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I used to work for John Green.

I blurt that periodically. Like, every time he publishes a new book. Maybe because I’m an ordinary person with no claim to fame of my own, I dunno. I do know that at one point he was my boss. The last time I put that tidbit on a resume, one of my interviewers was like “no way!” and I was like “way.”

I got that job, but I’m pretty sure that’s not the only reason why. Pretty sure.

Anyway, if you’ve never been here before or you just haven’t had the chance to keep up with my blog for the last eight months, you should know I have a brain tumor. I promise it’s relevant to my review of Green’s Turtles All the Way Down, but it’s going to look like it’s not for just a minute or two.

***

chemo thrombocytopenia
@EmilySuess on Twitter

Last night I asked Twitter what those tiny purplish dots on the pads of my fingers might be. When I first noticed them, I thought they were ink. (From what, exactly, I didn’t know; I hadn’t picked up a writing utensil in several weeks.) So I tried to wash them off without any luck.

However, with the help of the wonderful @mumsintheattic, I settled on them being chemo-induced thrombocytopenia.

Basically my blood quality sucks because of chemotherapy, and—voila!—microbruises. Turns out they’re kind of painful. The pain sensation is something akin to the prick you feel having your blood sugar tested. Only it’s hundreds of tiny locations, on all my fingers, and the pain lingers for hours instead of seconds.

I got thrombocytopenia from reading Turtles All the Way Down, because the weight of the hardcover on my hands was too much for my clot-challenged blood. So my finger tips bruised.

Suddenly Natasha Bedingfield just seems kind of, well, whiny. Am I right?

***

February 9, 2017 was the day Dr. Beaumont cut my head open. And though I’m certain he didn’t mean to, his knife work tweaked some already overzealous muscles in my head, neck, and shoulders. (The muscles seem to be terribly afraid that if they don’t wrench and clench twenty-four-seven, my head might actually fall off my body.)

Said muscles are so constantly worked up that they pinch a nerve, and the nerve invariably sends a signal back to the constricted muscles: WRENCH AND CLENCH HARDER. If there’s such a thing as neck sciatica, I have it.

This pain is exacerbated when I hold things like my cell phone or, say, a hardcover copy of Turtles All the Way Down. So at the end of every chapter (God bless authors who write short chapters) I’d put the book down and take a couple of deep breaths. Then I’d pick it back up despite myself and wince.

***

This is where the 100% spoiler free review comes in.

The fact that I read this book in less than 24 hours while causing myself more pain (more as in more than chronic pain) is a testament to how great it is. I particularly recommend it to my Spoonie friends. (Have a tissue when you get to page 89.)

If you’re thinking about buying it, do. You can use my Amazon affiliate link, and I’ll make a few cents. Which I will probably use to buy more books that cause me pain.

Turtles All the Way Down

Brain Tumor · House and Home

Fuuuuuuuhhhh

If yesterday’s theme was Fear and Sadness, today’s theme is Anger and Frustration.

Anger and frustration times eleventy kabillion zillion jillion.

I should back up though, or none of this will make any sense.

Since I came home in April, I’ve been using avoidance to cope, to ignore facing just how much I still can’t do.

For example, I haven’t tried to paint the shutters on the house because I know I can’t, and I know that trying would end with me throwing myself a pity party. There’d be lots of swearing at this pity party. Possibly destruction of my own property.

However, by not even attempting to paint the shutters, I save myself from the white hot tears of frustration that come when a woman (whose life motto has been something like “Fuck all y’all, I’m gonna do this thing”) is forced to confront the fact she cannot do some of the most basic shit.

***

But let’s talk about what’s going on today, the thing that prompted me to type up this rant:

dining room table.jpg

This is what my dining room looks like right now, and it’s looked this way for several weeks. Until today, I had successfully been soothing myself by ignoring the pile or reminding myself of a few simple truths:

We have other priorities.

We don’t sweat the small stuff. Clutter is small stuff.

It’s not where it belongs, but at least it’s clean.

Some of it is even folded.

But this morning, none of that was enough. I wanted to see a flat surface in my house with nothing on it, and I wanted that flat surface to be my dining room table. But getting to that flat surface was a little more complicated than just putting some clothes in the bedroom where they belonged.

To make this fabric mountain go away would mean packing up all the clothes in the bedroom that don’t presently fit me. (I’ve gained 36 pounds since surgery in February—nothing I owned  prior to my brain tumor diagnosis fits. Nothing.) So I got out the Space Bags and started emptying dresser drawers. Already a lot of work.

Well, I couldn’t get the vacuum to suck the air out of the bag, so I walked away. I was already breathing heavily, flushed, overheating. I hadn’t done much of anything yet, but fine. I pivoted and tried to hang up a few hoodies in my closet.

I struggled to make my hands do what I wanted, and when they refused and the hoodie was just a twisted up mess on a plastic hanger, I screamed “God-fucking-dammit!” Dan and Boomer came rushing down the hallway.

“I have to go sit on the toilet now,” I told Dan. They watched me as I hobbled down the hallway.

My emotions are directly tied to my screwed up digestive system. And as soon as I wrapped up the last raging syllable of my exclamation, my colon was like, “It’s go time, bitches.”

And that made me cry, because it’s really, really hard to wipe my ass.

What? You thought brain tumors were sexy or something?

***

Anyway, I’m back in my recliner, and I’ve given up on the laundry project for now. The guest bed is covered in sloppily folded clothes, laundry baskets, and space bags. Tomorrow is another day. Here’s hoping it doesn’t suck like this one.

 

 

Brain Tumor · House and Home

Ouch

Stuff hurts.

I went to bed yesterday at like 7:00 p.m., and then I woke up this morning at about 4 a.m. That’s a lot of sleep, even for someone with a brain tumor.

chocolate-factory-blueberries.jpgI go through these periods (that I think are weather-related) where everything swells up and I can barely move. If I were blue, you could cast me in the next Willy Wonka movie.

Imagine being this swollen and trying to bend over and pick something up off the floor. Or trying to roll over in bed.

Ain’t happenin’.

Anyway, last night during all that sleep, I had a really distressing dream. I was at a taco bar trying to grab some lunch, and instead of flour tortillas, this place had hamburger buns.

Night. Mare.

***

Before the hellish pain started this weekend, I had intended to write an upbeat post about all the nice things that happened last week. I’m a little too exhausted for much more in the way of writing, but I do have some pics to share of a few of the things that made my week, including: a blueberry buckle I made from a recipe on Pinterest, Milwaukee Summerfest socks sent by family, and the second zucchini from Dan’s garden this year that made the best zucchini lasagna in the world.

 

Brain Tumor · House and Home

Baking with a Brain Tumor: A Timeline

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I remember when baking was no big deal for me. I’d think to myself I want chocolate chip cookies. And, BAM! I’d start dancing around the kitchen with ingredients bunched up in my arms.

But life with a 6.3 cm brain stem tumor is a little different. I don’t get to really take moving around for granted anymore. I celebrate walking to the bathroom without a mobility device. I raise my fists in triumph when I empty the dishwasher. And I know I must sacrifice an entire day to the Spoon gods when I want to make my grandmother’s zucchini bread.

It’s totally worth the sacrifice, but it’s hard to adjust. I expect so much more from myself. Myself rarely lives up to expectation.

Here’s what I mean:

8:36 a.m. — Declare my intentions to make zucchini bread so that my husband knows what’s going down today.

10:46 a.m. — Empty and load the dishwasher to make room for baking shenanigans.

10:59 a.m. — Sit down in my recliner until I catch my breath and regain my balance. Hydrate.

12:04 p.m. — Read the recipe, grab the needed ingredients*, and put them on the counter for when I feel up to mixing things.

12:22 p.m. — Rollate myself back to my recliner and wait for my heart rate and breathing to return to normal.

2:14 p.m. — After a quick personal energy assessment, ask husband for help with 1.) getting out the food processer, which lives on a low shelf and is heavy, 2.) processing the zucchini, and 3.) washing the new loaf pans.

2:37 p.m. — Measure and dump ingredients in the bowl. Clutch counter top and wait for the kitchen to stop spinning.

2:38 p.m. — Sit down on rollator and take a break from stirring the batter because right arm is exhausted and left arm is just totally worthless here.

2:40 p.m. — Say yes when husband asks if you want him to continue stirring.

2:55 p.m. — Spread batter in pans while marveling at how your left arm shakes even though you are trying desperately to hold the bowl steady.

3:59 p.m. — Wonder how an hour has passed and the bread is ready to be yanked from the oven because you haven’t quite recovered from the physical exertion of baking a simple quick bread.

zucchini bread.jpg
* My grandma never made this for us with raisins or nuts, and I have never added them. So judge me accordingly.

Brain Tumor · House and Home

Dude Keeps Me In Stitches

danWe’re driving home from an appointment, and I check the patient app on my phone. There’s a new prescription listed. It says “suppository” in the description.

Me: Um, that new anti-nausea med I was prescribed? It’s a..uh…suppository? Doctor at the ER kind of left that bit out.
Dan: […]
Me: Don’t worry. I’m not asking you for help. I will never ask you for help with anything like that. Ever.
Dan: Heh. Heh, heh. Butt stuff.

***

I’m sitting in my nifty new recliner, which is right next to the picture window, with a view to our yard. Dan has gone outside with Boomer. Boomer is trying to goad a rabbit into chasing him.

Dan approaches the house, opens his eyes wide, and gestures obscenely with his tongue hanging out while staring at me through the window. In broad daylight.

***

Me: Going back on the dexamethasone has stopped my puking. I don’t think I’m going to take that suppository.
Dan: I made a special trip to the pharmacy. And that 4-day supply cost us $90 without insurance. Pretty sure you’re sticking something in your ass tonight, lady.

***

I’m back in my recliner. Dan’s back outside and has moved to the window on the east side of the house. I pretend not to see him, knowing he won’t quit his daylight peeping tom schtick until he sees I’m laughing. If I avoid laughing long enough, eventually the neighbors will notice.

***

That Oreo Thins Hypnotize commercial comes on for the bajillionth time while we’re watching Supernatural.

Dan: Yeah, just can’t stop picturing it.
Me: Picturing what?
Dan: This commercial. It sounds like a recording of Shaq standing in front of a truck stop urinal trying to pass a kidney stone.

***

Dan’s grabbing his keys and heading out the door for a trip to Meijer.

Dan: You need anything?
Me: Something obscenely caloric and comprised of at least 43% chocolate.
Dan: Next time, just tell me it’s Shark Week. I’ll know what to do.
Me: So we’ve moved on from calling it my Dark Passenger? OK.

Fibromyalgia · House and Home

List: Books I Read in 2016

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I don’t read near as much as I did when I was younger. Partly because adulthood means more time working and less time “hobbying” but also because fibromyalgia and its accompanying symptoms can make reading a struggle. And who needs more struggle, right?

Anyway, these are the books I got around to finishing this year. Complete with my Amazon referral links.

The New Jim Crow:Mass Incarceration in the Age of Colorblindness by Michelle Alexander

“This book directly challenges the notion that the election of Barack Obama signals a new era of colorblindness. With dazzling candor, legal scholar Michelle Alexander argues that “we have not ended racial caste in America; we have merely redesigned it.”

If you think everyone in jail belongs there, you are terribly misguided. If you don’t believe we disproportionately imprison people of color, you’re wrapping your arms around a fact-free narrative. This book will wake you up.


Brooklyn by Colm Tobin

“Colm Tóibín’s New York Times bestselling novel—now an acclaimed film starring Saoirse Ronan and Jim Broadbent nominated for four Academy Awards including Best Picture—is ‘a moving, deeply satisfying read’ (Entertainment Weekly) about a young Irish immigrant in Brooklyn in the early 1950s.”

I just thought I’d read the book to see what all the fuss was about. It’s a decent read.


The Everything Box by Richard Kadrey

“Reminiscent of the edgy, offbeat humor of Chris Moore and Matt Ruff…a dark and humorous story involving a doomsday gizmo, a horde of baddies determined to possess its power, and a clever thief who must steal it back . . . again and again.”

This was a fun and easy read. I was even able to crank up the font size on my Kindle and read it with a migraine. Nice distraction from the pain, plus a few good chuckles.


The Perks of Being a Wallflower by Stephen Chbosky

“Read the cult-favorite coming of age story that takes a sometimes heartbreaking, often hysterical, and always honest look at high school in all its glory. Also a major motion picture starring Logan Lerman and Emma Watson, The Perks of Being a Wallflower is a funny, touching, and haunting modern classic.”

I didn’t hate it. I basically read this just to be in the know; it gets referenced quite a bit in my social media circles. It was okay, but it didn’t really grip me. Still, I see what others appreciate in it.


Landline by Rainbow Rowell

“Landline asks if two people are ever truly on the same path, or whether love just means finding someone who will keep meeting you halfway, no matter where you end up.”

I’m a fan of Rainbow and her female characters. This book kind of put me in the mood for the holidays with it’s Christmas timeline, too. Bonus!


Eleanor & Park by Rainbow Rowell

Eleanor & Park reminded me not just what it’s like to be young and in love with a girl, but also what it’s like to be young and in love with a book.”-John Green, The New York Times Book Review

Have I ever mentioned that I used to work for John Green when I was living in Indianapolis and attending IUPUI? If he recommends a book, I’m going to look into it…eventually.


The Nest by Cynthia D’Aprix Sweeney

“Every family has its problems. But even among the most troubled, the Plumb family stands out as spectacularly dysfunctional. Years of simmering tensions finally reach a breaking point on an unseasonably cold afternoon in New York City as Melody, Beatrice, and Jack Plumb gather to confront their charismatic and reckless older brother, Leo, freshly released from rehab.”

I picked this out because it was in my OverDrive recommendations and I didn’t have to get on the waitlist to check it out from my local library on Kindle. Not disappointed.


The Fibro Manual by Ginerva Liptan, M.D.

“If you suffer from fibromyalgia and are struggling to get help from your doctor, you’re far from alone…. In this unique resource, Ginevra Liptan, M.D., shares a cutting-edge new approach that goes far beyond mainstream medical knowledge to produce dramatic symptom improvement.”

There are a couple of other fibromyalgia reads on this list. If you only read one of them, this is definitely the one I recommend.


Beyond Belief by Jenna Miscavige Hill

Jenna Miscavige Hill, niece of Church of Scientology leader David Miscavige, was raised as a Scientologist but left the controversial religion in 2005. In Beyond Belief, she shares her true story of life inside the upper ranks of the sect, details her experiences as a member Sea Org—the church’s highest ministry, speaks of her “disconnection” from family outside of the organization, and tells the story of her ultimate escape.”

Being born into a cult. Just…damn. Excellent read.


The Fatigue and Fibromyalgia Solution by Jacob Teitelbaum, M.D.

This book discusses research and advances in treating chronic fatigue syndrome, fibromyalgia, and the baffling, often dismissed symptoms associated with these debilitating conditions.”

I read this book after Liptan’s and don’t feel like it offered much new or different info. I think if I had read it first, might have preferred it. Hard to say though. No do-overs!


Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse

This is the self-helpiest of the fibromyalgia-related books I read. I skimmed so much of it because it just wasn’t doing it for me. However, if you’re into the life-coaching scene and don’t mind reading obvious statements wrapped in positive speak, this might be encouraging to you.

Read what you want. Get the help you need.


Going Clear: Scientology, Hollywood, and the Prison of Belief by Lawrence Wright

“Lawrence Wright—armed with his investigative talents, years of archival research, and more than two hundred personal interviews with current and former Scientologists—uncovers the inner workings of the church.”

Horror movies and stories have nothing on Scientology in the nightmare department. This books is fascinating. I picked it up after watching the HBO documentary of the same name.

Fibromyalgia · House and Home

An Update of Sorts

tree.PNGI had a fibro flare (or something) the week before Thanksgiving. Then on the Tuesday before Thanksgiving, I fell. I smacked the back of my head on the hardwood floor in the bedroom and landed rather spectacularly on my left elbow.

Then on the Friday after Thanksgiving I had a mild fever and was achy all over. Today, I have a sore throat, plugged ears, a runny and sneezy nose, and continued aches in addition to my usual chronic pain.

I’m grumpy, but Boomer seems to feel sorry for me and has taken to snuggling me more than usual.

***

While my parents were here for the holiday, my mom helped by shopping for and assembling our pre-lit Christmas tree. We also have fake candles in our front windows, and snowmen on top of our upright piano. It’s a cozy time to feel sick, at least. There’s more decorating that could be done, but will only happen if I’m feeling up to it. Fingers crossed.