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.
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….
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.
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.
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 WayDown, 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.
Every time I think I’ve hit Fatigue Level: Ultimate™, my body surprises me. And the fatigue gets worse.
Fatigue is hard to describe and even harder for those who don’t experience it to understand.
I remember when I was a non-runner, pretending to be a runner and training for 5Ks. I’d jog for 20 minutes without walking, bend over with my hands on my knees, and huff and puff for a few seconds and think that was fatigue.
But after a minute or two I’d catch my breath and be pretty much recovered. I could climb in my Corolla and drive myself home from the park. I could make dinner, do some laundry, write a blog post or two, go to bed, and then get up, shower, and work an eight-hour day. Repeat three or four times a week.
Not now, baby.
Right now, fatigue for me is:
Praying I can make it to the bed without fainting after a shower
Being unable to even ask Dan to grab my laptop for me, talking is too much work
Sleeping 12 hours at night and needing a nap midday
Getting winded walking from the living room to the bathroom
Having to sit on my rollator while waiting on the electric kettle
You know, it’s funny (in a non-humorous kind of way). I remember how excited I was to be able to stand the entire time I brushed my teeth in February. I was in the hospital awaiting tests and, ultimately, brain surgery. The doctors had just given me something like 10 mg of dexamethasone, and I felt invincible.
“I feel amazing,” I told the doc who would later slice my head open. “My sinuses are even clear.” I inhaled really deeply. “I didn’t need help with my shower. I DIDN’T HAVE TO LEAN ON THE COUNTER WHILE I BRUSHED MY TEETH THIS MORNING.”
He laughed at me, but not cruelly.
Well, now I’m back to leaning on the bathroom counter while I brush my teeth. I can’t stand upright for even two minutes. I’m frankly a little scared that I’m going to revert to pre-surgery disability and spend the rest of my life there.
But it doesn’t really help to worry about that yet, I know.
There are lots of things contributing to my fatigue. First of all, I’m fat. At 238 pounds, I am asking more of my muscles than I ever have in my life. I put on about 60 of those pounds in about 6 months. So I didn’t build up any gradual strength to support my own weight, like I might have if it’d taken me a year or two.
To reduce my weight, I’m weaning off the dexamethasone, but that leaves me extremely tired and achy. My weight is dropping, but oh so slowly. It’s so unfair. I’m trying to lose the pounds without the ability to exercise. How is that going to result in anything but failure?
And then there’s chemotherapy. Fucking chemo.
Last night I got my lab results from this week’s blood work. There’s nothing too scary in the numbers, but I continue to see a decline in all things red blood cell related. Basically, the shit’s making me anemic, on top of my already significant list of woes.
Last week my parents were here to help us clean and organize.
That’s because I came home after completing daily radiation therapy in April, and there were still things I hadn’t found a place for. My home office was the catch-all for anything I couldn’t deal with—meaning the floor was entirely covered with laundry baskets full of clothes, books, gifts, papers, and furniture.
Sure, it was annoying walking by that room and seeing the chaos, but it was also a hazard. I don’t exactly get around well on my feet when there aren’t a billion obstacles in my way.
Anyway, my parents (a.k.a. the best parents in the world) helped us clean, mow, fix my Kitchen Aid mixer, and more—all while my mom is dealing with her own sidelining medical problems.
In October, the plan is to have a garage sale as a way to finish de-cluttering and fund-raise for ourselves. If you’re in the area and want to see what we’ve got for sale, watch my Facebook page for an announcement. If you’re not in the area but want to help, you can contribute to my YouCaring campaign or buy from our Amazon wishlist (items automatically ship to our address when you buy).
It’s been so long since I’ve posted here. I feel like I should give a health update. Truth is, there’s not much to tell. I spend a lot of time sleeping. The first week after a chemo treatment, I’m exhausted and tired.
But there’s also the issue of my tapering off of dexamethasone again. I’m down to one half-milligram dose daily. It makes me so lethargic and all of my muscles are achy and sore. Not just major muscle groups like quads and hamstrings and biceps and triceps, but the muscles in my cheeks and hands and toes.
My oncologist says I’m on such a low dose of dex that he doesn’t see how it can be affecting me so dramatically. This is the story of my life, people. Medicines that barely affect most patients will potentially melt me from the inside out. It’s a blessing and a curse. On the one hand, if I take a half dose of Benadryl, I will sleep for a week. On the other hand, medical cannabis works so well on me that I only have to visit the dispensary every six weeks or so.
Anyway, coming off of the steroid is not fun, but I am more confident that I will actually be able to quit taking the dexamethasone entirely in a few more weeks. That will hopefully lead to much needed weight loss and help me scratch steroid-induced diabetes off my list of things to worry about.
Feeling pretty whiny today. Lots of things I’d like to rant about for this round of chemo, but too tired to articulate my complaints. Ten more of these, each six weeks apart… I feel like I’ll be doing this forever.