Brain Tumor

The Joy of Itching

I couldn’t sleep last night, because my legs were itchy and tingly. They jump and jerk involuntarily when the neuropathy gets bad. And I toss and turn trying desperately to get them to chill out. What I feel is a lot like restless leg syndrome (RLS), except the severity of the sensations depend on where I am in the chemotherapy cycle. I’m smack dab in the middle of the worst part, having taken Round 6 on Tuesday night.

Sometimes I put large ice packs on my legs and that helps. But I was too cold for that last night. So at 2:00 in the morning, I got out of bed and jumped on my FitDesk exercise bike. I rode for 20 minutes—which is a long-ass time for me in the middle of treatments—until the uncontrollable urge to move around and scratch my legs subsided.

By some miracle I was able to fall asleep before the itching and prickling returned. But here I am this Easter morning wondering what would happen to me if I just biked all day. As a chronic pain aficionado, I’m here to tell you that chronic itching is infinitely worse than…well, anything. Chronic pain might depress you, but chronic itching will make you lose your bloody mind.

Anyway, that’s just the legs. They’re the worst, by far, but I itch everywhere. I scratch my face. My head. My neck. My arms. When I reach peak itching, it feels like there are bugs crawling on my forehead and hairs tickling my face. It’s a real joy, let me tell ya.

House and Home

Good Reads 2018: January – March

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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.

 

Brain Tumor

How Tired I Am

Today I smell like a bar of Zest soap from the 1980s. Thanks to chemo, I’m too weak and dizzy to take my usual shower, so I mopped myself up with those bathing cloths I brought home from the hospital over a year ago. They smell like old school soap.

It’s not my first choice in fragrance, but it could be worse, right? As it stands if I paired this scent with a hint of Listerine, I might convince myself I’m 8 years old again, sitting on my Grampa’s lap.

***

If I remember right, he sat in a fake leather recliner that made so much noise when you sat in it. The end of each arm was repaired with duct tape. And the shade of the floor lamp beside the chair still had the plastic cover on it. There was a fake spider nestled between the shade and the cellophane. I don’t know how it got there; I never asked.

And an ink pen was wedged in near some decorative flourishes below the bulb and switch. (When I was little, I thought the lamp had a built-in pen holder.) Sometimes I’d see Grampa use the pen to write. Usually he’d stick it in his ear to scratch an itch.

***

Anyway, I parked my rollator at the sink so I could sit to wash my face and brush my teeth. That’s how tired I am today.

Brain Tumor

Another Round of Chemo Underway

My platelets were good enough this week (113) that I was cleared to take round 6 of chemo last night at bedtime.

I don’t feel great this morning, but I am relieved to have finally reached the halfway point of my planned treatments.

Dan went to run some errands a little bit ago and kissed my forehead before leaving. Then he scrunched up his face and got out the thermometer, pointing it at my forehead. 100.1.

Not worrisome, but it has to be watched.

Chemo always raises my temperature. That’s not listed as a side effect, but it happens reliably every time I take it.

So far this morning I have only been out of bed for bathroom breaks. I actually have less pain today than yesterday, but I am much weaker and lacking in energy. It would all be worse I’m sure, if it hadn’t been for the IV fluids I received on Monday. (It took about three weeks to get it worked out, but I finally have a standing order for fluids. Yay!)

Brain Tumor

So Stinking Close

Got my CBC results yesterday, and my platelets were 93. Close, but not quite the 100 we were looking for, and my doctor is a bit of a stickler for these things. That means Chemotherapy Round 6 is delayed by yet another week, pushing me about three weeks past the ideal six-week dosing.

I currently have mixed feelings about the delay. I mean, I really want to get done with all the chemo crap. This roller coaster of feeling like a steaming turd and then being throat punched by another dose of gleostine just as I’m starting to feel human again is making me cranky.

But! Going this long between doses has also given my wrecked body a little bit of a break. My appetite is better, my energy is up slightly, my neuropathy is less intense, and my dehydration is manageable with enough sports drinks and electrolyte pops. As a result, I’ve had just enough energy to accomplish a few necessary items on my to-do list—including renewing my driver’s license and getting an eye exam.

Not that I drive right now.

I’m lucky in that I don’t have seizures and my doctor has not revoked my driving privileges, but I’m not comfortable driving. I get vertigo looking left or right, and I still don’t have full range of motion when turning my head. I find the thought of getting behind the wheel really unsettling. But I thought it would be easier to keep my license current than let it lapse.

And now it’s back to trying to get a standing order for IV fluids. (I love my team at Washington University, but they’re kind of far away. Things get complicated when it’s time to coordinate the little stuff that needs to happen close to home.)

Happy Wednesday.

 

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

Is it Monday Yet?

I went to bed last night feeling decent; I woke up this morning feeling completely dehydrated. Then I dry heaved into a vomit bag until I could finally get a Pedialyte Pop down.

This is becoming my pattern:

  1. Drink fluids all damn day, including 20 oz. of Gatorade, and a eat a Pedialyte Pop right before bed.
  2. Dehydrate while I’m sleeping.
  3. Wake up dizzy and thirsty.
  4. Dry heave.
  5. Eat another Pedialyte Pop.

The big mystery is why do I keep drying out over night? I have a humidifier, and humidity in the room is reading 60%. I have water and something with electrolytes before bed every night. I drink between 80 and 100 ounces of fluids in a typical day. And it’s been 7—almost 8—weeks since my last chemo round. (I’d anticipate problems in the first week after taking the Gleostine.)

I’m trying to get through the weekend without a trip to the ER, because after next week I’ll be fixed up with a standing order. And I can get IV fluids whenever I need them without taking up a bed in the ER or accruing thousands more in medical bills.

If I can just make it a couple more days.