Brain Tumor · House and Home

Sink, Sasquatch, Sale

Dan’s out at Sam’s this morning buying a bag of whole bean coffee, a case of Coke Zero, and a bag of bird seed. You know, the essentials.

I had intended to go with him, but I woke up this morning with a migraine. And, instead of asking him to bring me some Gatorade to wash down my morning meds, I decided I was tough enough to do it myself.

I made it to the kitchen and back without falling, but the room was spinning out of control from dizziness by the time I made it back to the bedroom. By the time I’d flattened myself out on the bed and closed my eyes, the damage had been done. My vertigo and migraines and gag reflex must all be on the same circuit. I said goodbye to the medicine I’d just taken and waited for my vision to return to normal.

Early this morning while the sky was still dark, I had awoken from a dream that I’d received the results of another MRI and the doctors were telling me “there was another dot in my head.” I’m pretty confident that was just my brain’s way of processing the incoming migraine while I slept.  But that split second of consciousness where I thought I actually had a second brain tumor was pretty shitty.

So, instead of continuing my streak of feeling pretty good for a girl with brain cancer, I’m staying home today and taking it easy. It’s disappointing though. Dan and I were talking last night about the things we wanted to do today, and now I just can’t. I can, however, share some pictures with you of the stuff we did this past week while my parents were in town helping us with projects around the house.

Mom helped us with the landscaping out in front of the house. She laid the stone border and mulch and helped us hide the hideous gas meter by arranging my potted flowers and the landscaping rocks scattered around our yard. (This is actually not the final product, but it’s close.)

landscaping.jpg

Dad installed the kitchen sink we got for Christmas (to replace the cracked, leaking one). It wasn’t easy, either. He had to improvise to get it to work and there was talk that we might have to call a plumber.

kitchen sink.jpg

Mom drove me out to Country Arbors Nursery to get Dan’s birthday present. (His birthday isn’t for another couple of weeks, but I can’t drive and I wanted to surprise him.) Yes, that’s a three-foot-tall Sasquatch in my back yard. I named him Pipsquatch. We love him.

sasquatch.jpg

We also had a garage sale. It doesn’t take long for me to feel suffocated by too many things around the house. Particularly things we don’t want or use. What we didn’t sell, we loaded in my parents’ Jeep and took to Goodwill. Bonus: we dragged the old kitchen sink and a 25-cubic-foot, poop brown Lady Kenmore side-by-side refrigerator to the curb and a couple of scrappers hauled them both away for us. The weather was gorgeous.

garage sale

 

House and Home

Good Reads 2018: January – March

good reads.pngTry Audible and Get Two Free Audiobooks

Artemis | Andy Weir

This book was written by the guy who wrote The Martian and performed by Rosario Dawson. (I love her.) It’s about a heist that takes place on the moon. It’s witty and science-y.

Promise Me, Dad | Joe Biden

This was a hard read for me, seeing how the book was equal parts family story and political memoir. If you don’t already know, Joe’s son died of a brain tumor. That made this book a bit of a traumatic read for me. But it was also comforting. I’m a bigger fan of Joe Biden having read this book, and I already thought pretty highly of him.

Artemis Fowl | Eoin Colfer

Just a coincidence that Artemis appears in the title of this too. It’s what I’d call YA Fantasy and it was a fun distraction. I listened to this (and other titles) on Audible during chemo week and during my two-hour visits to Expanded Care for my IV fluids. The guy reading this book was fantastic, a true voice actor.

Coming Clean | Kimberly Rae Miller

This is the memoir of a woman whose parents are hoarders. You’ll laugh; you’ll cry. And you’ll be reminded that the people on that TLC show are real people and, I believe, understand them just a little bit better. I loved this book, and I think Kimberly Rae Miller is a gem.

A Wrinkle in Time | Madeleine L’Engle

Somehow I had managed to never hear of this book until I was 38 and it was being released as a Disney movie. It was decent, but I think I would have enjoyed it immensely more if I was 12.

What She Knew | Gilly MacMillan

I also listened to this book on Audible. For a book about a high-profile kidnapping, it was a long slog. I finished listening more out of duty than enjoyment. In fact, I ended up changing the playback speed to 2x real time just to get it over with. Perhaps it would have been more enjoyable as a read instead of a listen.

Fire and Fury: Inside the Trump White House | Michael Wolf

I. Had. To. If you don’t know, I’m a political junkie and I think Trump’s a nincompoop.

The Good Samaritan | John Marrs

Read this one on my Kindle before my headaches got to be a little too frequent, and it was good. It’s about a woman who works at a suicide hotline looking for candidates to encourage to commit suicide. I’d give it four stars and a trigger warning.

Post contains Amazon affiliate links.

 

House and Home · Memories

This Post Isn’t about Cancer

Emily's First Dog

Mom and Dad gave me money for my birthday, which was almost two weeks ago. The present I bought with that money arrived today: a Bissell SpotBot Pet carpet and upholstery cleaning machine.

I had one of these SpotBots with my first dog.

Taubensee was a great dog, but sometimes prone to eating things he shouldn’t. Like an entire batch of homemade pumpkin chocolate chip cookies that I’d left on the counter to cool.

(SIDE NOTE: After cleaning up the cookie barf that day some 11 years ago, I still can’t stand the sight or smell of pumpkin chip cookies.)

Anyway, I loved my dog AND this machine. But then my beloved dog died. And then a few weeks later my husband and I moved to Urbana from Indianapolis. So the SpotBot was sold in a different sort of purge—the one I dubbed The Great Purge™. It took place when we moved into temporary housing that didn’t allow us to get another pet. And then our “temporary” housing turned into OMG-how-are-we-still-in-this-tiny-apartment-two-years-later housing.

You know how some women of a certain age get kid crazy? Well, in the two years I lived without a dog, I got pet crazy. All I could talk about how was how I wanted a puppy and kitty and I wanted them to be BFFs.

In 2015, on the day we moved into our very own house and out of that one-bedroom apartment, we signed adoption papers at the Champaign County Humane Society. We have a puppy and a kitty and they are BFFs.

Both of these critters are pukers, but especially Boomer the lab mix. He pukes when he gets too excited, he pukes when he eats ice cubes, he pukes after a long day at the dog park, he pukes in the car on the way back from my check ups at Siteman Cancer Center in St. Louis, and he pukes because that’s just what labs do—puke.

He pukes more than me on chemo. That’s something.

So this little machine has been on my wishlist for a while now, because you just put the thing over the messy spot after you’ve cleaned the debris, push a button, and walk away while it scrubs and sanitizes and deodorizes and whatnot. Its little wand attachment works on upholstery too, so the whole car’s getting a shampoo.

Sorry if I’m getting commercial-y, but I’m geeked. Happy birthday to me.

The links in this post are affiliate links. 

 

Brain Tumor · House and Home

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

john green turtles all the way down.PNG

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

zucchini bread recipe.jpg

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.