Brain Tumor

Even My Fatigue is Tired

I woke up, did Head and Shoulders Knees and Toes, and washed my morning meds down with a large glass of water. Then I gulped a protein shake. And then I climbed back in bed and began writing this blog post on my phone. (That’s how you know I’m exhausted, because I hate writing on my phone.)

It was something like -2°F last I looked. A life-long fan of winter, I’ve noticed a change this season. I’ve been sick of winter since December 26. I need sunshine and warm air on my cheeks, even though two-thirds of the meds I’m on make me photosensitive and come with warnings: “avoid direct sunlight or perish.”

Or something like that.

I’m anxious in the anxiety way (as opposed to the weird “looking forward to something” way people use the word where I’m originally from). We’re heading to St. Louis this afternoon for a day full of shopping and sightseeing tomorrow.

Did I say sightseeing? I meant tests and doctors. Silly me. Starting at 7:45, which means leaving the folks’ house an hour early to drive into the city and park and allow me time to hobble to the hospital MRIs. (The Center for Advanced Medicine MRIs are closer, but were all booked up. Ugh.)

Anyway, about my anxiety. I haven’t been doing so well lately. A lot of time in bed. A lot.

I’m finally off the dexamethasone, and have been for two weeks, but I can barely walk I’m so weak. And the pinchy pain that keeps nagging me? I think it’s swollen lymph nodes, based on location. My guess for cause would be rebound swelling after being on the dex for so long and then quitting. But honestly I have no fucking idea what the cause is. I know I hurt. I know I’m tired.

And that brings me to the source of my anxiety: I don’t have good things to tell the doctor. See, chronically sick people dread telling their doctors that things aren’t good or improving or at least not getting worse.

Spending years in the fucked up US medical system with a horrible doctor or three conditions patients that it’s on us to feel better whether we do or not. It’s so traumatizing that, even when the bad doctors have all been fired and there are only good ones left, we still feel responsible for not getting better.

“But Emily, you have a brain tumor. Your doctors totally get it,” is something I sometimes tell myself. But I suspect it’s something like a veteran saying to herself, “It’s OK. You’re home now. Fireworks are fine.”

Brain Tumor

Dexamethasone Sucks

Remember how I’m coming off the dexamethasone? Here’s an update I posted to Facebook yesterday:

As of 8:36 am, I was 96 hours dexamethasone free. But as morning turned into noon, I started feeling sick to my stomach. (I’ve been down this road before, so I had a small lunch of yogurt and 2 cuties and popped a 1/4 mg of dex to stave off the vomiting. You’re supposed to take dex with food.)

“I don’t want to start horking and land in the ER again like I did in June,” I told Dan.

Four minutes later my entire head was in a vomit bag.

So here’s the question: Did I or didn’t I take dex today? Or maybe it’s Schrödinger’s Dex?

While the vomiting has been quelled by a medical cannabis patch, the nausea is lingering. My appetite is at about 6%, but that’s OK for now. I still have a ton of steroid weight to lose. So far I’ve made do with a bowl of Rice Chex, some lactose-free, high-protein milk, and eight Wheat Thins.

I’m going to try real hard to eat some chicken nuggets tonight. Salt and protein have always been my way out of Pukelandia.

Aside from the gross stuff, I’m having major muscle fatigue and soreness. My quads are screaming at me like I’ve been marathon training without taking any rest days, despite the fact I’ve just been in bed whining since Tuesday.

I’m also having some issues with rebound swelling and double vision. Both things to keep an eye on, because my brain could swell, too, without the dex—and that would be bad. And require me to go back on the dex. And we don’t want that.

Dear god, we do not want that.

 

Brain Tumor

The Dexamethasone Saga Continues

I haven’t taken dexamethasone since December 31, 2017. I didn’t plan for it to be a year-end thing, it just worked out that way. And, although I’m proud to be 72 hours steroid free, I am not completely out of the woods.

I’ve been pretty much bed-ridden since Christmas, when I started the final step down before quitting. My muscles hurt in ways that force me to shuffle down the hallway taking the tiniest steps. I ask Dan to fill my water glass for me and turn switches on and off, because I just can’t.

My skin hurts. When I twist my torso to grab the toilet paper orI roll over in bed, my skin feels like it’s being twisted or pinched after first being carpet burned. But all of this is on the under side of my skin, not the surface. (Don’t worry if this doesn’t make sense to you; it doesn’t make sense to me either.)

My coat hanger pain is so intense, it frequently reduces me to tears. The referred pain from the nerve it pinches goes into my left arm, my neck, my jaw, my ear. And the muscles covering my skull on the left side of my head—the ones I used to use to wiggle my ears—are just tiny over-dramatic knots. When my head hits the pillow, they signal to my brain that someone’s digging around in an open wound.

Because I hate to leave things on a completely negative note: I bought the Bedknobs & Broomsticks Blu-Ray with an Amazon gift card the other day. It is supposed to arrive today, and once it gets here I am going to watch it on repeat until I fall asleep.

 

 

Brain Tumor

A few quick things before I doze off

I’ve been meaning to post for a while, but have been waiting for my mental fog to clear. I don’t think that’s going to happen any time soon. So I’m going for bullet points and brevity:

  • Chemo Round 4 is coming up December 12. The timing works out about as nicely as I could hope for, considering I don’t want to puke or sleep my way through Christmas.
  • My friend Phil over at Noiseless Chatter is holding his annual Xmas Bash! on December 8 (right before Chemo Round 4, when I will be feeling quite spry—yay!). If you’re up for laughing at some really awful holiday television episodes and cutting inappropriate jokes with the coolest people you’ve never met during the live stream chat, you’ll love it. Also, this year’s event will help me raise money for medical bills. (But you don’t have to donate to participate. Join the fun no matter what!)
  • Over Thanksgiving two really cool things happened: I got myself out of a bathtub and I descended and ascended a flight of stairs on my own. Going down the stairs was more difficult because I get dizzy and slightly nauseated looking down, but going up the stairs I realized I’m getting a lot stronger. Go me!
  • After I got news that my tumor had shrunk, I decided to celebrate by buying Christmas sheet music. Going back to the piano is not as hard as I thought it might be, and I’ve been playing for a few minutes several times a week.

That’s all I got for now.

Brain Tumor · Medical Cannabis

Shrinkage!

center for advanced medicine siteman

My eyes still well up when I remember my oncologist entering the exam room on Wednesday. He walked in holding a print copy of my MRI report. I’d had the procedure done around 8:30 that morning, and when Dan and I met with him about three hours later he was holding the results.

“The tumor is smaller!” he said. He bent down to show me the part of the report with the happy news, and read it out loud to us.

“Oh my god! That’s fantastic!” I said. “I am so happy!” Our three faces were nothing but teeth, so big were the smiles.

***

When it was time to discuss my course of treatment back in February, I never considered not doing the chemo and radiation. I knew that some patients opted out, of course, but my personal philosophy was to do anything and everything the doctors recommended.

(And also legally vape some weed and ingest some “enhanced” peanut butter cookies.)

That does not mean, however, that I never second-guessed my decision after a dose of chemo. When you’re so weak and sick you can’t get out of bed for 7-10 days and the MRIs all come back saying the tumor is “stable,” you do wonder whether it’s worth it, making yourself that miserable for no significant results.

But when those thoughts did creep up, I tried to picture my neurosurgeon back in February standing over my hospital bed the night before my craniotomy. “You’re young, and all of us believe this will help you,” he said.

“All of us” was a big deal, because there were like 40 doctors weighing in on my case.

They learned just what kind of mutant my tumor was, and they picked a treatment course that had a history of working. I’d try to remind myself of that every time I had to swallow capsules full of medicine derived from mustard gas.

***

After taking a few minutes to celebrate my withering bundle of astrocytes, Dr. A asked if there was anything I wanted to discuss. So I brought up that my fatigue was getting unbearable and asked whether he thought I should go back on an iron supplement.

(About a year ago, my primary doctor had asked me to give them a try, but I’d stopped after being admitted to the hospital just because I had SO MANY PILLS to take that I forgot about the supplement.)

“I really don’t think iron is going to help. This fatigue is 100% my fault. It’s my medicine that’s causing the problem. So I’m going to prescribe you Ritalin to take following your next round of gleostine.”

I was kind of surprised. I mean, Ritalin? Really? But I see now that it’s also used to treat narcolepsy. And the generic name of the drug starts with “meth” so….

 

Memories

That One Time When I Got Scolded for Reading the Bible in Church

boys will be boys

This is the earliest I remember being held accountable for something boys did.

***

Imagine, if you will, a Sunday School room in a Baptist church basement circa 1990. Pale blue cinder block walls and hideous multi-colored commercial carpet. A tack strip holding up a poster of a young girl, her hands in the air, her feet off the ground. At the top are the words “Forgiven and Free!” (Which for weeks I misread as saying “Foreign and Free” and I was so, so confused. Lolz. But that has nothing to do with this post.)

For this particular Sunday School lesson there are four people gathered around two folding tables pushed together. I, two male peers, and the teacher are all sitting in cold, metal folding chairs.

“Emily, will you read aloud for the lesson?”

“Sure.” I grab one of the church-provided KJV bibles on the table and read the passage—I don’t recall the exact chapter and verse. What I do remember, vividly, is that the passage contained the word “ass.” So, I dunno, Jesus might’ve been riding into Jerusalem or something.

I read “ass” out loud when I come to it, and the two boys just go into fits, giggling and snickering because “Emily said a cuss word.” And in church no less.

I say to myself, “Verily, God is gonna smite me.”

The teacher doesn’t address the boys for being disruptive or for being immature twits; instead she turns to me. “Emily, next time we come across that word, we’ll just say ‘donkey’, okay?” She’s firm in the way adults are when giving children a warning not to do a thing again. Using her next-time-there-will-be-consequences voice.

The boys straighten their faces and I nod. My cheeks are hot with embarrassment and I feel ashamed for having sworn in church. I wonder whether the teacher is going to tell my parents what I did.

***

I  held on to the shame for some time—years even. Deep down knowing that there was something unjust about what had happened but unable to name it. I mean, I was reading the section my teacher asked me to read…from a bible the church bought!

But now I know that boys will be boys and some people will let them.

 

 

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